WorldWideScience

Sample records for research involved studies

  1. Salutogenic service user involvement in nursing research: a case study.

    Science.gov (United States)

    Mjøsund, Nina Helen; Vinje, Hege Forbech; Eriksson, Monica; Haaland-Øverby, Mette; Jensen, Sven Liang; Kjus, Solveig; Norheim, Irene; Portaasen, Inger-Lill; Espnes, Geir Arild

    2018-05-12

    The aim was to explore the process of involving mental healthcare service users in a mental health promotion research project as research advisors and to articulate features of the collaboration which encouraged and empowered the advisors to make significant contributions to the research process and outcome. There is an increasing interest in evaluating aspects of service user involvement in nursing research. Few descriptions exist of features that enable meaningful service user involvement. We draw on experiences from conducting research which used the methodology interpretative phenomenological analysis to explore how persons with mental disorders perceived mental health. Aside from the participants in the project, five research advisors with service user experience were involved in the entire research process. We applied a case study design to explore the ongoing processes of service user involvement. Documents and texts produced while conducting the project (2012-2016), as well as transcripts from multistage focus group discussions with the research advisors, were analysed. The level of involvement was dynamic and varied throughout the different stages of the research process. Six features: leadership, meeting structure, role clarification, being members of a team, a focus on possibilities and being seen and treated as holistic individuals, were guiding principles for a salutogenic service user involvement. These features strengthened the advisors' perception of themselves as valuable and competent contributors. Significant contributions from research advisors were promoted by facilitating the process of involvement. A supporting structure and atmosphere were consistent with a salutogenic service user involvement. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

  2. The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme.

    Science.gov (United States)

    Wyatt, Katrina; Carter, Mary; Mahtani, Vinita; Barnard, Angela; Hawton, Annie; Britten, Nicky

    2008-06-01

    The value of consumer involvement in health services research is widely recognized. While there is a growing body of evidence about the principles of good consumer involvement, there is little research about the effect that involvement can have on the research. This evaluation assessed the level and impact of consumer involvement in the London Primary Care Studies Programme (LPCSP), all of whose individual projects had to demonstrate substantial involvement as a condition of funding. To evaluate consumer involvement in the LPSCP and understand what impact consumers had on the research process and outcomes. A multi-method case study approach was undertaken, using survey techniques, interviews, focus groups, observation and scrutiny of written documents. The overall data set comprised 61 questionnaires, 44 semi-structured interviews, 2 focus groups and 15 hours of observation of meetings. Eleven primary care-based research projects which together made up the LPCSP. An in-depth description of consumer involvement in the Programme was produced. Nine projects had consumers as co-applicants, four projects had been completed before the evaluation began and one was still ongoing at the time of the evaluation. Of the eight projects which have produced final reports, all met their aims and objectives. Consumers had had an additional impact in the research, in the initial design of the study, in recruitment of the research subjects, in developing data collection tools, in collecting the data, in analysis and disseminating the findings. Consumer involvement in National Health Service research is a relatively recent policy development and while there is an increasing amount of literature about how and why consumers should be involved in research, there is less evidence about the impact of such involvement. This evaluation provides evidence about the impact that consumers have not only on the research process but also on the outcomes of the research.

  3. Can the impact of public involvement on research be evaluated? A mixed methods study

    Science.gov (United States)

    Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah

    2011-01-01

    Abstract Background  Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. Objective  To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Methods  Mixed methods including a two‐round Delphi study with pre‐specified 80% consensus criterion, with follow‐up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self‐selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Results  Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. Conclusions  This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed. PMID:21324054

  4. Can the impact of public involvement on research be evaluated? A mixed methods study.

    Science.gov (United States)

    Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah

    2012-09-01

      Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement.   To investigate whether it is feasible to evaluate the impact of public involvement on health and social research.   Mixed methods including a two-round Delphi study with pre-specified 80% consensus criterion, with follow-up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self-selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed.   Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement.   This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed. © 2011 Blackwell Publishing Ltd.

  5. Lay involvement in the analysis of qualitative data in health services research: a descriptive study.

    Science.gov (United States)

    Garfield, S; Jheeta, S; Husson, F; Jacklin, A; Bischler, A; Norton, C; Franklin, B D

    2016-01-01

    There is a consensus that patients and the public should be involved in research in a meaningful way. However, to date, lay people have been mostly involved in developing research ideas and commenting on patient information.We previously published a paper describing our experience with lay partners conducting observations in a study of how patients in hospital are involved with their medicines. In a later part of the same study, lay partners were also involved in analysing interviews that a researcher had conducted with patients, carers and healthcare professionals about patient and carer involvement with medicines in hospital. We therefore wanted to build on our previous paper and report on our experiences with lay partners helping to conduct data analysis. We therefore interviewed the lay members and researchers involved in the analysis to find out their views.Both lay members and researchers reported that lay partners added value to the study by bringing their own perspectives and identifying further areas for the researcher to look for in the interviews. In this way researchers and lay partners were able to work together to produce a richer analysis than would have been possible from either alone. Background It is recognised that involving lay people in research in a meaningful rather than tokenistic way is both important and challenging. In this paper, we contribute to this debate by describing our experiences of lay involvement in data analysis. Methods We conducted semi-structured interviews with the lay partners and researchers involved in qualitative data analysis in a wider study of inpatient involvement in medication safety. The interviews were transcribed verbatim and coded using open thematic analysis. Results We interviewed three lay partners and the three researchers involved. These interviews demonstrated that the lay members added value to the analysis by bringing their own perspectives; these were systematically integrated into the analysis by the

  6. An Observational Study of Children's Involvement in Informed Consent for Exome Sequencing Research.

    Science.gov (United States)

    Miller, Victoria A; Werner-Lin, Allison; Walser, Sarah A; Biswas, Sawona; Bernhardt, Barbara A

    2017-02-01

    The goal of this study was to examine children's involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8-17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child's involvement in the majority (73%) of sessions, and most (75%) children also verbally participated. Provider facilitation was strongly associated with likelihood of child participation. These findings underscore that strategies such as asking for children's opinions and soliciting their questions show respect for children and may increase the likelihood that they are engaged and involved in decisions about research participation.

  7. Involving Latina/o parents in patient-centered outcomes research: Contributions to research study design, implementation and outcomes.

    Science.gov (United States)

    Pérez Jolles, Mónica; Martinez, Maria; Garcia, San Juanita; Stein, Gabriela L; Thomas, Kathleen C

    2017-10-01

    Comparative effectiveness research (CER) is supported by policymakers as a way to provide service providers and patients with evidence-based information to make better health-care decisions and ultimately improve services for patients. However, Latina/o patients are rarely involved as study advisors, and there is a lack of documentation on how their voices contribute to the research process when they are included as collaborators. The purpose of this article was to contribute to the literature by presenting concrete contributions of Latina/o parent involvement to study design, implementation and outcomes in the context of a CER study called Padres Efectivos (Parent Activation). Researchers facilitated a collaborative relationship with parents by establishing a mentor parent group. The contributions of parent involvement in the following stages of the research process are described: (i) proposal development, (ii) implementation of protocols, (iii) analysis plan and (iv) dissemination of results. Mentor parents' contributions helped tailor the content of the intervention to their needs during proposal, increased recruitment, validated the main outcome measure and added two important outcome measures, emphasized the importance of controlling for novice treatment status and developed innovative dissemination strategies. Mentor parents' guidance to the researchers has contributed to reaching recruitment goals, strengthened the study protocol, expanded findings, supported broad ownership of study implications and enriched the overall study data collection efforts. These findings can inform future research efforts seeking an active Latino parent collaboration and the timely incorporation of parent voices in each phase of the research process. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  8. Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS).

    Science.gov (United States)

    Boote, Jonathan D; Twiddy, Maureen; Baird, Wendy; Birks, Yvonne; Clarke, Clare; Beever, Daniel

    2015-10-01

    It is good practice for the public to be involved in developing health research. Resources should be available for researchers to fund the involvement of the public in the development of their grants. To describe a funding award scheme to support public involvement in grant development, managed by an NIHR Research Design Service (RDS). Case examples of how the award contributed to successful grant applications and findings from a recent evaluation of the scheme are presented. A case study of resource provision to support public involvement activities in one region of England. University and NHS-based researchers, and members of the public. Between 2009 and 2012, the RDS approved 45 public involvement funding awards (totalling nearly £19,000). These awards contributed to 27 submitted applications at the time of writing, of which 11 were successful (totalling over £7.5 million). The evaluation revealed difficulties encountered by some researchers when involving the public in grant development, which led to suggestions about how the scheme could be improved. This award scheme represents an efficient method of providing researchers with resources to involve the public in grant development and would appear to represent good value for money. © 2013 John Wiley & Sons Ltd.

  9. Enhancing public involvement in assistive technology design research.

    Science.gov (United States)

    Williamson, Tracey; Kenney, Laurence; Barker, Anthony T; Cooper, Glen; Good, Tim; Healey, Jamie; Heller, Ben; Howard, David; Matthews, Martin; Prenton, Sarah; Ryan, Julia; Smith, Christine

    2015-05-01

    To appraise the application of accepted good practice guidance on public involvement in assistive technology research and to identify its impact on the research team, the public, device and trial design. Critical reflection and within-project evaluation were undertaken in a case study of the development of a functional electrical stimulation device. Individual and group interviews were undertaken with lay members of a 10 strong study user advisory group and also research team members. Public involvement was seen positively by research team members, who reported a positive impact on device and study designs. The public identified positive impact on confidence, skills, self-esteem, enjoyment, contribution to improving the care of others and opportunities for further involvement in research. A negative impact concerned the challenge of engaging the public in dissemination after the study end. The public were able to impact significantly on the design of an assistive technology device which was made more fit for purpose. Research team attitudes to public involvement were more positive after having witnessed its potential first hand. Within-project evaluation underpins this case study which presents a much needed detailed account of public involvement in assistive technology design research to add to the existing weak evidence base. The evidence base for impact of public involvement in rehabilitation technology design is in need of development. Public involvement in co-design of rehabilitation devices can lead to technologies that are fit for purpose. Rehabilitation researchers need to consider the merits of active public involvement in research.

  10. Patient involvement in research priorities (PIRE)

    DEFF Research Database (Denmark)

    Piil, Karin; Jarden, Mary

    2016-01-01

    Introduction: Patient involvement in healthcare has expanded from the clinical practice setting to include collaboration during the research process. There has been a growing international interest in patient and public involvement in setting research priorities to reduce the risk of discrepancy...... between what patients with cancer and their relatives experience as important unanswered questions and those which are actually researched. This study aims to challenge the conventional research process by inviting patients with life-threatening cancer (primary malignant brain tumours or acute leukaemia......), relatives and patient organisations to join forces with clinical specialists and researchers to identify, discuss and prioritise supportive care and rehabilitation issues in future research. Methods and analysis: This is an exploratory qualitative study comprising two sets of three focus group interviews...

  11. Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey

    Directory of Open Access Journals (Sweden)

    Vale Claire L

    2012-01-01

    Full Text Available Abstract Background We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs, meta-analyses and other studies carried out by the UK Medical Research Council (MRC Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV. Methods Staff responsible for studies that were included in a Unit Progress Report (MRC CTU, April 2009 were asked to complete a semi-structured questionnaire survey regarding consumer involvement. This was defined as active involvement of consumers as partners in the research process and not as subjects of that research. The electronic questionnaires combined open and closed questions, intended to capture quantitative and qualitative information on whether studies had involved consumers; types of activities undertaken; recruitment and support; advantages and disadvantages of involvement and its perceived impact on aspects of the research. Results Between October 2009 and April 2010, 138 completed questionnaires (86% were returned. Studies had been conducted over a 20 year period from 1989, and around half were in cancer; 30% in HIV and 20% were in other disease areas including arthritis, tuberculosis and blood transfusion medicine. Forty-three studies (31% had some consumer involvement, most commonly as members of trial management groups (TMG [88%]. A number of positive impacts on both the research and the researcher were identified. Researchers generally felt involvement was worthwhile and some felt that consumer involvement had improved the credibility of the research. Benefits in design and quality, trial recruitment, dissemination and decision making were also perceived. Researchers felt they learned from consumer involvement, albeit that there were some barriers. Conclusions Whilst most researchers identified benefits of involving consumers, most of studies included in the survey had no involvement. Information from this survey will inform the development

  12. Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: results of a survey.

    Science.gov (United States)

    Vale, Claire L; Thompson, Lindsay C; Murphy, Claire; Forcat, Silvia; Hanley, Bec

    2012-01-13

    We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs), meta-analyses and other studies carried out by the UK Medical Research Council (MRC) Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV. Staff responsible for studies that were included in a Unit Progress Report (MRC CTU, April 2009) were asked to complete a semi-structured questionnaire survey regarding consumer involvement. This was defined as active involvement of consumers as partners in the research process and not as subjects of that research. The electronic questionnaires combined open and closed questions, intended to capture quantitative and qualitative information on whether studies had involved consumers; types of activities undertaken; recruitment and support; advantages and disadvantages of involvement and its perceived impact on aspects of the research. Between October 2009 and April 2010, 138 completed questionnaires (86%) were returned. Studies had been conducted over a 20 year period from 1989, and around half were in cancer; 30% in HIV and 20% were in other disease areas including arthritis, tuberculosis and blood transfusion medicine. Forty-three studies (31%) had some consumer involvement, most commonly as members of trial management groups (TMG) [88%]. A number of positive impacts on both the research and the researcher were identified. Researchers generally felt involvement was worthwhile and some felt that consumer involvement had improved the credibility of the research. Benefits in design and quality, trial recruitment, dissemination and decision making were also perceived. Researchers felt they learned from consumer involvement, albeit that there were some barriers. Whilst most researchers identified benefits of involving consumers, most of studies included in the survey had no involvement. Information from this survey will inform the development of a unit policy on consumer involvement, to guide future

  13. A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges.

    Science.gov (United States)

    Mockford, Carole; Murray, Matt; Seers, Kate; Oyebode, Jan; Grant, Richard; Boex, Sue; Staniszewska, Sophie; Diment, Yvonne; Leach, Jim; Sharma, Uma; Clarke, Rosemary; Suleman, Rashida

    2016-01-01

    In the United Kingdom (UK), official bodies such as the Department of Health and research funders such as the National Institute for Health Research support and encourage lay involvement in all stages of research studies. The SHARED study has had substantial patient and public involvement (PPI) from developing the idea to dissemination. The aim of the study has been to develop recommendations led by service users for health and social care professionals to use at hospital discharge and in care planning for people living with memory loss and their carers. This article is about how the study started and the benefits, costs and challenges we encountered as the lead and lay co-researchers. Once we were successful with the grant application, we had to recruit and train the lay co-researchers and obtain various approvals before we could start the project. We had various support from funders, the Research Ethics Committee, lay members of Alzheimer's Society and from the lay co-researchers. However, we encountered some challenges with paying the lay co-researchers and with getting the approval for the co-researchers to interview staff on NHS premises. The challenges were overcome eventually but some aspects of the study changed because of this. We suggest that some changes could be made to the research system which would lead to greater inclusion of the lay co-researchers in research studies and would make the process more straightforward for the research team. Background Involving patients and the public in all stages of research has been the focus of the SHARED study. Patient and public involvement (PPI) is an important strategic priority for the Department of Health and funders such as the National Institute for Health Research. The aim of this paper is to describe the benefits, challenges and costs involved in setting up the research study with lay members as part of the research team. The study focused on developing service user-led recommendations for people with

  14. Public involvement in research within care homes: benefits and challenges in the APPROACH study.

    Science.gov (United States)

    Froggatt, Katherine; Goodman, Claire; Morbey, Hazel; Davies, Sue L; Masey, Helen; Dickinson, Angela; Martin, Wendy; Victor, Christina

    2016-12-01

    Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health-care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. A prospective case study design, with an embedded qualitative evaluation of PIR activity. Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Qualitative data collection involved discussion groups, and site-specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  15. Getting involved in research.

    Science.gov (United States)

    Banner, Davina; Grant, Lyle G

    2011-01-01

    The need for quality nursing research to promote evidence-based practice and optimize patient care is well recognized. This is particularly pertinent in cardiovascular nursing, where cardiovascular disease continues to be the leading cause of morbidity and mortality worldwide (World Health Organization, 2007). Across the spectrum of academic, clinical, and health care administration nursing roles, research remains fundamental to bridging theory, practice, and education (LoBiondo-Wood, Haber, Cameron, & Singh, 2009). Despite recognition of the importance of nursing research, the gap between research and practice continues to be an ongoing issue (Funk, Tornquist, & Champagne, 1995; Pettengill, Gillies, & Clark, 1994; Rizzuto, Bostrom, Suterm, & Chenitz, 1994; Rolfe, 1998). Nurses are appropriately situated to contribute to research that improves clinical outcomes and health service delivery. However, the majority of nurses in clinical practice do not have a significant research component structured into their nursing role. In this research column, the authors outline the importance of nurses being engaged in research and present some different levels of involvement that nurses may assume. A continuum of nursing research involvement includes asking researchable questions, being a savvy consumer of research evidence, finding your own level of research involvement, and aspiring to lead.

  16. A devolved model for public involvement in the field of mental health research: case study learning.

    Science.gov (United States)

    Moule, Pam; Davies, Rosie

    2016-12-01

    Patient and public involvement in all aspects of research is espoused and there is a continued interest in understanding its wider impact. Existing investigations have identified both beneficial outcomes and remaining issues. This paper presents the impact of public involvement in one case study led by a mental health charity conducted as part of a larger research project. The case study used a devolved model of working, contracting with service user-led organizations to maximize the benefits of local knowledge on the implementation of personalized budgets, support recruitment and local user-led organizations. To understand the processes and impact of public involvement in a devolved model of working with user-led organizations. Multiple data collection methods were employed throughout 2012. These included interviews with the researchers (n = 10) and research partners (n = 5), observation of two case study meetings and the review of key case study documentation. Analysis was conducted in NVivo10 using a coding framework developed following a literature review. Five key themes emerged from the data; Devolved model, Nature of involvement, Enabling factors, Implementation challenges and Impact. While there were some challenges of implementing the devolved model it is clear that our findings add to the growing understanding of the positive benefits research partners can bring to complex research. A devolved model can support the involvement of user-led organizations in research if there is a clear understanding of the underpinning philosophy and support mechanisms are in place. © 2015 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

  17. Parent Involvement in Homework: A Research Synthesis

    Science.gov (United States)

    Patall, Erika A.; Cooper, Harris; Robinson, Jorgianne Civey

    2008-01-01

    New emphasis is being placed on the importance of parent involvement in children's education. In a synthesis of research on the effects of parent involvement in homework, a meta-analysis of 14 studies that manipulated parent training for homework involvement reveals that training parents to be involved in their child's homework results in (a)…

  18. Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries

    Directory of Open Access Journals (Sweden)

    LeGrandeur Jane

    2010-03-01

    Full Text Available Abstract Background Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma or may have a broad aim to research a range of factors that influence the health and development of children. Studies are increasingly intended to serve as research platforms by providing access to data and biological samples to researchers over many years. This study examines how six birth cohort studies in North America and Europe that involve genetic research handle key ethical, legal and social (ELS issues: recruitment, especially parental authority to include a child in research; initial parental consent and subsequent assent and/or consent from the maturing child; withdrawal; confidentiality and sample/data protection; handling sensitive information; and disclosure of results. Methods Semi-structured telephone interviews were carried out in 2008/09 with investigators involved in six birth cohort studies in Canada, Denmark, England, France, the Netherlands and the United States. Interviewees self-identified as being knowledgeable about ELS aspects of the study. Interviews were conducted in English. Results The studies vary in breadth of initial consent, but none adopt a blanket consent for future use of samples/data. Ethics review of new studies is a common requirement. Studies that follow children past early childhood recognise a need to seek assent/consent as the child matures. All studies limit access to identifiable data and advise participants of the right to withdraw. The clearest differences among studies concern

  19. Institutional ethical review and ethnographic research involving injection drug users: a case study.

    Science.gov (United States)

    Small, Will; Maher, Lisa; Kerr, Thomas

    2014-03-01

    Ethnographic research among people who inject drugs (PWID) involves complex ethical issues. While ethical review frameworks have been critiqued by social scientists, there is a lack of social science research examining institutional ethical review processes, particularly in relation to ethnographic work. This case study describes the institutional ethical review of an ethnographic research project using observational fieldwork and in-depth interviews to examine injection drug use. The review process and the salient concerns of the review committee are recounted, and the investigators' responses to the committee's concerns and requests are described to illustrate how key issues were resolved. The review committee expressed concerns regarding researcher safety when conducting fieldwork, and the investigators were asked to liaise with the police regarding the proposed research. An ongoing dialogue with the institutional review committee regarding researcher safety and autonomy from police involvement, as well as formal consultation with a local drug user group and solicitation of opinions from external experts, helped to resolve these issues. This case study suggests that ethical review processes can be particularly challenging for ethnographic projects focused on illegal behaviours, and that while some challenges could be mediated by modifying existing ethical review procedures, there is a need for legislation that provides legal protection of research data and participant confidentiality. Copyright © 2013 Elsevier Ltd. All rights reserved.

  20. Managing Ethical Problems in Qualitative Research Involving Vulnerable Populations, Using a Pilot Study

    Directory of Open Access Journals (Sweden)

    Evalina van Wijk RN, PhD

    2013-02-01

    Full Text Available The purpose of the researcher's study was to examine the meaning that intimate partners of female rape victims attached to their lived experiences after the rape. The conduct of qualitative research concerning non-offending partners of female rape victims, however, often involves multifaceted ethical and practical challenges, which can be managed through the use of pilot studies. The pilot study described in this report had three objectives. The first was to pretest and refine the proposed method for locating, accessing, and recruiting intimate partners of female rape victims, within the first two weeks after the rape, for participation in a six-month longitudinal study. The second objective was to identify and prevent all possible risk factors in the proposed recruitment and data collection methods that could harm the participants' safety during the main study. The third objective was to determine the feasibility of the main study, in terms of the limited financial and human resources available. The pilot phase was valuable in identifying ethical and methodological problems during the recruitment of participants and collection of data. It allowed for methodological adjustments prior to the main study and confirmed the feasibility of the overall research design. A pilot, pretesting phase is therefore seen as an essential component of a qualitative study involving a vulnerable population.

  1. Involving Nepali academics in health research

    DEFF Research Database (Denmark)

    Neupane, Dinesh; van Teijlingen, E; Khanal, V

    2013-01-01

    Many academics from Nepal do not involve in research activities. There are several factors hindering the involvement such as inadequate human resources and lack of financial resources. Despite limited human and financial resources, we believe it is still possible to attract many Nepali academics...... in health research. This paper purposes some ideas to increase involvement of Nepali academics in health research....

  2. Ethics in research involving prisoners.

    Science.gov (United States)

    Pont, Jörg

    2008-01-01

    Research involving prisoners repeatedly went astray during the last century, culminating in the cruel medical experiments inside the Nazi concentration camps that gave rise to the Nuremberg Code. However, prisoners continued to become victims of scientific exploitation by the rapidly evolving biomedical research industry. The common roots of these abuses were the flawed philosophy that the needs of the society outweigh the needs of the individual and the researchers' view that prisoners are cheap, easy to motivate and stable research subjects. Prisoners are vulnerable to exploitation and abuse by research because their freedom for consent can easily be undermined, and because of learning disabilities, illiteracy and language barriers prevailing within prisoner populations. Therefore, penal laws of some countries supported by a number of internationally agreed documents prohibit research involving prisoners completely. However, prisoners must also be regarded as vulnerable to the specific health problems in prisons, e.g. transmissible diseases, mental disorders and suicide - problems that need to be addressed by research involving prisoners. Additionally, the participation of prisoner patients in research they directly can benefit from should be provided. Hence, it must be a common objective to find the right balance between protection from exploitation and access to research beneficial to prisoners.

  3. Ethical issues when involving people newly diagnosed with dementia in research.

    Science.gov (United States)

    Holland, Suzanne; Kydd, Angela

    2015-03-01

    To discuss the methodological and ethical review challenges encountered by researchers who want to enable people with dementia to be involved in research. There has been increasing recognition of the importance of involving people with dementia in research. However, an argument has centred on the protection of these vulnerable clients versus their freedom to be involved as participants in research. People with dementia do have the right to have their experiences explored. Involving this client group in research is essential to gain a true understanding of their needs. The lead author's experience of conducting a study in which people newly diagnosed with dementia were recruited as research participants. An interpretive phenomenological approach was adopted during this qualitative study, with data collected by means of one to one interviews with people newly diagnosed with dementia. This study was completed within the set timeframe, but a large part of the work was spent gaining ethical approval. This meant that the timeframe of the study period was reduced and as a result, it was only possible to recruit three participants. However, people with dementia are perhaps one of the most vulnerable client groups and it is only right that they should not be subjected to harm. Ethical review is an important part of research. Meeting the ethical requirements of research involving people with dementia requires time and careful preparation to ensure that researchers safeguard the interests of this vulnerable client group, while also allowing the participants the opportunity to exercise their autonomy to their fullest potential. Conducting research that involves people with dementia may be time consuming, but it is only fair that this client group are afforded the freedom to be involved in research. This small time-limited study points to the need for larger pilot studies to hear from individuals what needs they have following a diagnosis of dementia.

  4. Ethical issues in research involving children and young people

    International Nuclear Information System (INIS)

    Scally, Andy

    2014-01-01

    This article identifies the key ethical issues that need to be addressed in any research study involving children and young people, accessed through the NHS. It makes specific reference to the Declaration of Helsinki and to additional guidance developed for researchers from a variety of disciplines, both within healthcare and in other fields of study. The focus of the paper is on defining the key ethical issues, identifying the complexities in the legislative framework underpinning research involving this patient group and offering practical advice on when, and how, ethical approval needs to be sought

  5. Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT.

    Science.gov (United States)

    Taylor, Rachel M; Mohain, Jasjeet; Gibson, Faith; Solanki, Anita; Whelan, Jeremy; Fern, Lorna A

    2015-03-14

    Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'. Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference. BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes. Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We

  6. Service user involvement enhanced the research quality in a study using interpretative phenomenological analysis - the power of multiple perspectives.

    Science.gov (United States)

    Mjøsund, Nina Helen; Eriksson, Monica; Espnes, Geir Arild; Haaland-Øverby, Mette; Jensen, Sven Liang; Norheim, Irene; Kjus, Solveig Helene Høymork; Portaasen, Inger-Lill; Vinje, Hege Forbech

    2017-01-01

    The aim of this study was to examine how service user involvement can contribute to the development of interpretative phenomenological analysis methodology and enhance research quality. Interpretative phenomenological analysis is a qualitative methodology used in nursing research internationally to understand human experiences that are essential to the participants. Service user involvement is requested in nursing research. We share experiences from 4 years of collaboration (2012-2015) on a mental health promotion project, which involved an advisory team. Five research advisors either with a diagnosis or related to a person with severe mental illness constituted the team. They collaborated with the research fellow throughout the entire research process and have co-authored this article. We examined the joint process of analysing the empirical data from interviews. Our analytical discussions were audiotaped, transcribed and subsequently interpreted following the guidelines for good qualitative analysis in interpretative phenomenological analysis studies. The advisory team became 'the researcher's helping hand'. Multiple perspectives influenced the qualitative analysis, which gave more insightful interpretations of nuances, complexity, richness or ambiguity in the interviewed participants' accounts. The outcome of the service user involvement was increased breadth and depth in findings. Service user involvement improved the research quality in a nursing research project on mental health promotion. The interpretative element of interpretative phenomenological analysis was enhanced by the emergence of multiple perspectives in the qualitative analysis of the empirical data. We argue that service user involvement and interpretative phenomenological analysis methodology can mutually reinforce each other and strengthen qualitative methodology. © 2016 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.

  7. Community Involvement in TB Research

    NARCIS (Netherlands)

    M. van der Werf (Marloes); S.G. Heumann (Silke); E.M.H. Mitchell

    2011-01-01

    textabstractWhile communities at risk have been both drivers and partners in HIV research, their important role in TB research is yet to be fully realized. Involvement of communities in tuberculosis care and prevention is currently on the international agenda. This creates opportunities and

  8. Involving disabled children and young people as partners in research: a systematic review.

    Science.gov (United States)

    Bailey, S; Boddy, K; Briscoe, S; Morris, C

    2015-07-01

    Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather

  9. Ethical issues in neonatal research involving human subjects.

    Science.gov (United States)

    Fleischman, Alan R

    2016-06-01

    Research involving critically ill neonates creates many ethical challenges. Neonatal clinical research has always been hard to perform, is very expensive, and may generate some unique ethical concerns. This article describes some examples of historical and modern controversies in neonatal research, discusses the justification for research involving such vulnerable and fragile patients, clarifies current federal regulations that govern research involving neonates, and suggests ways that clinical investigators can develop and implement ethically grounded human subjects research. Copyright © 2016 Elsevier Inc. All rights reserved.

  10. Involving lay People in Research and Professional Development Through Gaming

    DEFF Research Database (Denmark)

    Magnussen, Rikke

    2017-01-01

    a systematic mapping review methodology, the focus was to map and examine research in these types of games or game environments, and to identify potentials and gaps in the field to inform future research. 89 studies were identified through iterative searching and identification processes applying keywords......Due to the increasing significance of games where lay people are involved in generating knowledge for research or development, the current paper presents a mapping review of status and trends in research of games designed for citizen science, crowdsourcing or community driven research. Using...... they were involved and studies where participants develop knowledge for professional use. The 32 studies were selected for a grounded theory inspired qualitative review and six themes were identified: 1. Motivation; 2. Quality of participant contribution; 3. Learning/education; 4. System/task analysis; 5...

  11. 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.

  12. Methods for Involving Older People in Health Research-A Review of the Literature.

    Science.gov (United States)

    Schilling, Imke; Gerhardus, Ansgar

    2017-11-29

    Demographic change has increased the need for research on healthcare for older people. Recently there has been a growing awareness that research might benefit from actively involving patients and the public in study design and conduct. Besides empowering patients and democratizing research, involvement enhances the quality of research and the development of equitable healthcare solutions. Little is known about how to involve older people. This review aims to support scientists intending to involve older people in health research by systematically identifying and describing studies involving older people and analyzing associated facilitators and challenges. Old people were operationalized as people living with old-age-related conditions. We conducted a systematic search in PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane library for the period 2007 to July 2017 and also manually searched reference lists of the nine retrieved articles and other relevant sources. While involvement of older people in research is feasible, specific challenges related to this group need be taken into account. Strategies to enhance effective involvement comprise a thoughtful choice of location, use of visualization and accessible communication, building good relationships and flexible approaches. Further research is needed on the involvement of people in care homes or with vision, hearing or mobility limitations.

  13. Evaluating public involvement in research design and grant development: Using a qualitative document analysis method to analyse an award scheme for researchers.

    Science.gov (United States)

    Baxter, Susan; Muir, Delia; Brereton, Louise; Allmark, Christine; Barber, Rosemary; Harris, Lydia; Hodges, Brian; Khan, Samaira; Baird, Wendy

    2016-01-01

    The National Institute for Health Research (NIHR) Research Design Service (RDS) for Yorkshire and Humber has been running a public involvement funding scheme since 2008. This scheme awards researchers a small amount of money to help them get involvement from patients and/or the public. Involvement activities take place at the time when researchers are planning studies, and when they are completing application forms to request funding for a proposed research project. After the public involvement activities researchers are asked to write a report for the RDS describing what they did with the public involvement funding. This study analysed those reports using an approach which included members of a public involvement panel in the data analysis process. The aim of the work was to see what the views and experiences of researchers who received funding were, and what might be learned for the future of the scheme. Twenty five reports were analysed. Four main themes were identified, these described: the added value of public involvement; aspects to consider when planning and designing public involvement; different roles of public contributors; and aspects of valuing public member contributions. The group approach to analysis was successful in enabling involvement of a variety of individuals in the process. The findings of the study provide evidence of the value of public involvement during the development of applications for research funding. The results also indicate that researchers recognise the variety in potential roles for the public in research, and acknowledge how involvement adds value to studies. Background A regional Research Design Service, funded by the National Institute for Health Research, introduced a small grant in 2008, to support public involvement (often known as patient and public involvement [PPI]) activities during the development of applications for research funding. Successful applicants are requested to submit a report detailing how the grant

  14. Trends in research involving human beings in Brazil

    Directory of Open Access Journals (Sweden)

    Ricardo Eccard da Silva

    2015-02-01

    Full Text Available Developing countries have experienced a dramatic increase in the number of clinical studies in the last decades. The aim of this study was to describe 1 the number of clinical trials submitted to the Brazilian Health Surveillance Agency (Agência Nacional de Vigilância Sanitária, Anvisa from 2007 to 2012 and the number of human-subject research projects approved by research ethics committees (RECs and the National Research Ethics Committee (Comissão Nacional de Ética em Pesquisa, CONEP in Brazil from 2007 to 2011 and 2 the diseases most frequently studied in Brazilian states in clinical trials approved in the country from 2009 to 2012, based on information from an Anvisa databank. Two databases were used: 1 the National Information System on Research Ethics Involving Human Beings (Sistema Nacional de Informação Sobre Ética em Pesquisa envolvendo Seres Humanos, SISNEP and 2 Anvisa's Clinical Research Control System (Sistema de Controle de Pesquisa Clínica, SCPC. Data from the SCPC indicated an increase of 32.7% in the number of clinical trials submitted to Anvisa, and data from the SISNEP showed an increase of 69.9% in those approved by RECs and CONEP (from 18 160 in 2007 to 30 860 in 2011. Type 2 diabetes (26.0% and breast cancer (20.5%-related to the main causes of mortality in Brazil-were the two most frequently studied diseases. The so-called “neglected diseases,” such as dengue fever, were among the least studied diseases in approved clinical trials, despite their significant impact on social, economic, and health indicators in Brazil. Overall, the data indicated 1 a clear trend toward more research involving human beings in Brazil, 2 good correspondence between diseases most studied in clinical trials approved by Anvisa and the main causes of death in Brazil, and 3 a low level of attention to neglected diseases, an issue that should be considered in setting future research priorities, given their socioeconomic and health effects.

  15. Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting.

    Science.gov (United States)

    Snow, R; Crocker, J C; Crowe, S

    2015-01-01

    Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped to choose topics for research about type I diabetes. We aimed to find out if, and why, researchers often rejected their choices. We looked at a project which brought together patients, carers and healthcare workers to choose topics for research about type 1 diabetes. The group first asked patients, carers and healthcare workers to suggest ideas for research questions. But the group had to follow rules about what counted as a good research question. Some people's ideas did not count as good research questions, and they were rejected at the start. We looked at who were most likely to have their ideas rejected at the start. We found that patients and carers were most likely to have a suggestion rejected. Then we looked at the rejected questions in detail. They were mostly about curing diabetes, preventing diabetes and understanding how diabetes works. There were also some questions about access to medicines and the quality of care. Researchers should ask patients and carers for help deciding what counts as a good research question from the start of projects like these. We should also think about what might be getting in the way of patients and carers making more of a difference in research. Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers

  16. The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study.

    Science.gov (United States)

    Blackburn, Steven; McLachlan, Sarah; Jowett, Sue; Kinghorn, Philip; Gill, Paramjit; Higginbottom, Adele; Rhodes, Carol; Stevenson, Fiona; Jinks, Clare

    2018-01-01

    In the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings.Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI.In partnership with PPI contributors, we have used these findings to develop:a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPIFifteen co-produced recommendations to improve the practice and delivery of PPI. Background: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research. Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded

  17. Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers.

    Science.gov (United States)

    McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec

    2016-01-01

    In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical research involve more consumers (patients) and community members (the public) in their research. In 2012, workshop attendees were invited to do an online survey to find out the effect, if any, that attending a workshop had on their awareness of and attitudes to consumer and community involvement. They were also asked about changes in their behaviour when it came to the involvement of consumers and the community in their work. The study found that, for people who answered the survey, more than double the number found consumer and community involvement very relevant after attending a workshop, compared with the number who thought that before attending one. Also, amongst those who answered the survey, 94 % thought that the workshop increased their understanding about involvement. Background There is limited evidence of the benefits of providing training workshops for researchers on how to involve consumers (patients) and the community (public) in health and medical research. Australian training workshops were evaluated to contribute to the evidence base. The key objective was to evaluate the impact of the workshops in increasing awareness of consumer and community involvement; changing attitudes to future implementation of involvement activities and influencing behaviour in the methods of involvement used. A secondary objective was to use a formal evaluation survey to build on the anecdotal feedback received from researchers about changes in awareness, attitudes and behaviours. Methods The study used a cross-sectional, online survey of researchers, students, clinicians, administrators and members of non-government organisations who attended Consumer and Community Involvement Program training workshops between 2009 and 2012 to ascertain changes to awareness

  18. Action research methodology in clinical pharmacy: how to involve and change.

    Science.gov (United States)

    Nørgaard, Lotte Stig; Sørensen, Ellen Westh

    2016-06-01

    Introduction The focus in clinical pharmacy practice is and has for the last 30-35 years been on changing the role of pharmacy staff into service orientation and patient counselling. One way of doing this is by involving staff in change process and as a researcher to take part in the change process by establishing partnerships with staff. On the background of the authors' widespread action research (AR)-based experiences, recommendations and comments for how to conduct an AR-study is described, and one of their AR-based studies illustrate the methodology and the research methods used. Methodology AR is defined as an approach to research which is based on a problem-solving relationship between researchers and clients, which aims at both solving a problem and at collaboratively generating new knowledge. Research questions relevant in AR-studies are: what was the working process in this change oriented study? What learning and/or changes took place? What challenges/pitfalls had to be overcome? What were the influence/consequences for the involved parts? When to use If you want to implement new services and want to involve staff and others in the process, an AR methodology is very suitable. The basic advantages of doing AR-based studies are grounded in their participatory and democratic basis and their starting point in problems experienced in practice. Limitations Some of the limitations in AR-studies are that neither of the participants in a project steering group are the only ones to decide. Furthermore, the collective process makes the decision-making procedures relatively complex.

  19. 'But is it a question worth asking?' A reflective case study describing how public involvement can lead to researchers' ideas being abandoned.

    Science.gov (United States)

    Boote, Jonathan D; Dalgleish, Mary; Freeman, Janet; Jones, Zena; Miles, Marianne; Rodgers, Helen

    2014-06-01

    It is good practice for the public to be involved in developing research ideas into grant applications. Some positive accounts of this process have been published, but little is known about when their reactions are negative and when researchers' ideas are abandoned. To present a case study account of when an academic-led idea for funding was not supported by stroke survivors and carers who were asked to contribute to its development, together with a reflection on the implications of the case from all the stakeholders involved. A reflective case study of a research idea, developed by an academic researcher, on which stakeholders were consulted. University researchers, clinicians, public involvement managers, and stroke survivors and carers from the NIHR's Stroke Research Network. Although the idea met with the approval of health professionals, who were keen to develop it into a funding bid, the stroke survivors and carers did not think the idea worth pursuing. This lack of patient and carer support led to the idea being abandoned. Reflecting on this, those involved in the consultation believed that the savings accrued from abandoning the idea, in terms of ensuring that public money is not wasted, should be seen as an important benefit of public involvement in the research process. Little is known about the role of the public in the abandonment of research ideas. We recommend that further research is undertaken into this important contribution that patients and the public can make to health research. © 2012 John Wiley & Sons Ltd.

  20. Methodological issues involved in conducting qualitative research ...

    African Journals Online (AJOL)

    The purpose of this article is to describe the methodological issues involved in conducting qualitative research to explore and describe nurses' experience of being directly involved with termination of pregnancies and developing guidelines for support for these nurses. The article points out the sensitivity and responsibility ...

  1. Models and impact of patient and public involvement in studies carried out by the Medical Research Council Clinical Trials Unit at University College London: findings from ten case studies.

    Science.gov (United States)

    South, Annabelle; Hanley, Bec; Gafos, Mitzy; Cromarty, Ben; Stephens, Richard; Sturgeon, Kate; Scott, Karen; Cragg, William J; Tweed, Conor D; Teera, Jacqueline; Vale, Claire L

    2016-07-29

    Patient and public involvement (PPI) in studies carried out by the UK Medical Research Council Clinical Trials Unit (MRC CTU) at University College London varies by research type and setting. We developed a series of case studies of PPI to document and share good practice. We used purposive sampling to identify studies representing the scope of research at the MRC CTU and different approaches to PPI. We carried out semi-structured interviews with staff and patient representatives. Interview notes were analysed descriptively to categorise the main aims and motivations for involvement; activities undertaken; their impact on the studies and lessons learned. We conducted 19 interviews about ten case studies, comprising one systematic review, one observational study and 8 randomised controlled trials in HIV and cancer. Studies were either open or completed, with start dates between 2003 and 2011. Interviews took place between March and November 2014 and were updated in summer 2015 where there had been significant developments in the study (i.e. if the study had presented results subsequent to the interview taking place). A wide range of PPI models, including representation on trial committees or management groups, community engagement, one-off task-focused activities, patient research partners and participant involvement had been used. Overall, interviewees felt that PPI had a positive impact, leading to improvements, for example in the research question; study design; communication with potential participants; study recruitment; confidence to carry out or complete a study; interpretation and communication of results; and influence on future research. A range of models of PPI can benefit clinical studies. Researchers should consider different approaches to PPI, based on the desired impact and the people they want to involve. Use of multiple models may increase the potential impacts of PPI in clinical research.

  2. 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].

  3. 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

  4. Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study.

    Science.gov (United States)

    Price, Amy; Schroter, Sara; Snow, Rosamund; Hicks, Melissa; Harmston, Rebecca; Staniszewska, Sophie; Parker, Sam; Richards, Tessa

    2018-03-23

    While documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information. A before and after comparison of PPI reported in research papers published in The BMJ before and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers. Between 1 June 2013 and 31 May 2014, The BMJ published 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy, The BMJ published 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors. Infrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction of The BMJ 's policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  5. 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.

  6. Committees for Ethics in Research involving human subjects.

    Science.gov (United States)

    Hossne, William Saad; Vieira, Sonia; De Freitas, Corina Bontempo Duca

    2008-01-01

    In Brazil since October 1996 there have been guidelines for research involving human subjects. Now human subjects know when their treatment is part of research. Deceit is no longer tolerated. But is not enough to say we offer an explanation to the potential subject and we offer a choice before he or she is confronted with an informed consent form. As in all professional activity, scientific investigation needs social controls. In Brazil, the ultimate responsibility of an investigation lies on the investigator, but in every institution where research is carried out there is a Committee for Ethics in Research. All Committees are subordinated to the National Commission of Ethics in Research, which is submitted to the Brazilian Institute of Health. During 2005 around 17,000 protocols involving 700,000 human subjects were revised by 475 Committees distributed all over the country. Approximately 7,000 people are now working in these Committees.

  7. Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study

    Science.gov (United States)

    Snape, D; Kirkham, J; Preston, J; Popay, J; Britten, N; Collins, M; Froggatt, K; Gibson, A; Lobban, F; Wyatt, K; Jacoby, A

    2014-01-01

    Objective There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. Design Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. Setting The UK health and social care research community. Participants Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. Results We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base. Conclusions Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for ‘best practice’ standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the

  8. A comparative study of Swedish generation Y decision-making style between high involvement and low involvement products.

    OpenAIRE

    Pakdeejirakul, Warangkhana; Agosi, Micheal

    2013-01-01

    Title A comparative study of Swedish generation Y decision-making style between high involvement and low involvement products. Research questions  How does product involvement influence consumer decision-making styles in Generation Y of Swedish nationals for the two selected products?  To what level does the model proposed by Sproles and Kendall in 1986 now apply to the modern-day Generation Y in Sweden as they decide on both of the selected products? Purpose The purpose of this research unde...

  9. Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya

    Science.gov (United States)

    Jao, Irene; Kombe, Francis; Mwalukore, Salim; Bull, Susan; Parker, Michael; Kamuya, Dorcas; Molyneux, Sassy

    2015-01-01

    Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries. This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders’ attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere. In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework. PMID:26297748

  10. Status, challenges and facilitators of consumer involvement in Australian health and medical research

    Directory of Open Access Journals (Sweden)

    Girgis Afaf

    2010-11-01

    Full Text Available Abstract Background The emergent international practice of involving consumers in health research is driven, in part, by the growing share of health research that can only be applied in and emerge from knowledge that is shaped by human values and societal contexts. This is the first investigation of its kind to identify the current prevalence, challenges, enabling factors and range of approaches to consumer involvement in health and medical research in Australia. Methods A nation-wide survey of research funding organisations and organisations that conduct research was performed during 2008-2009. Results Marked variation in consumer involvement experience and perceptions exists between research funders and researchers. Research funders were over eight times more likely than organisations conducting research to involve consumers in identifying research needs and prioritising research topics. Across both groups, practical and time constraints were reported as key challenges to involving consumers, while guidelines on consumer involvement and evidence of effect were the most important potential enablers. More than a third of research organisations indicated that when consumer involvement was a condition of research funding, it was an important facilitator of involvement. Conclusion It is no longer simply enough to keep society informed of important scientific breakthroughs. If Australian health research is to take into account important social contexts and consequences, it must involve consumers. A set of minimum consumer involvement standards and associated guidelines, that are agreed and routinely adopted, could ensure that consumers and the Australian community they represent, are given an opportunity to shed light on experiences and local circumstance, and express views and concerns relevant to health research.

  11. INVOLVING CHILDREN AND THEIR PARENTS IN RESEARCH DESIGN.

    Science.gov (United States)

    Hibberd, Suzannah

    2016-09-01

    Article 12 of the UN Convention on the Rights of the Child, states that children should be involved in decisions that directly affect them.1 Research involving children should ensure that the opinions and assistance of children and young people is sought at the beginning of the project as their perspectives may influence all aspects of the research design. To describe the challenges recruiting paediatric patients and members of the public to consult on the design of a research project. Posters were put up around the Children's Hospital including pharmacy to recruit paediatric patients and parents to review a research proposal involving children with long-term conditions. There were two responses to the poster, a father and his 15 year old daughter, and a father with a 2 year old child. The father of the 15 year old attended the initial planning meeting, unfortunately the 15 year old and the father of the 2 year old were unable to attend on the day although both agreed to participate in the project. The meeting gave the opportunity to explain the research proposal and answer questions. It was established that the lay team would review the lay summary, participant information leaflet (PIL), and questionnaires that would be sent to the participants. It was arranged that all further contact would be via email due to travel constraints.Patient and public involvement (PPI) in research requires the individuals to be reimbursed for their time. The National Institute for Health Research rate is £18.75 per hour. The lay team members were informed of this and were reimbursed for attending the planning meeting. The use of posters to recruit PPI into the research design had limited success. Since recruitment, the Children's Hospital has launched a youth partnership which may be able to assist in recruitment of lay team members in the future.The logistics of how to pay the lay team members needed to be resolved before their recruitment to ensure timely payment. A form has been

  12. 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.

  13. 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

  14. The construct of food involvement in behavioral research: scale development and validation.

    Science.gov (United States)

    Bell, Rick; Marshall, David W

    2003-06-01

    The construct of involvement has been found to influence brand loyalty, product information search processing, responses to advertising communications, diffusion of innovations, and ultimately, product choice decisions. Traditionally, involvement has been defined as being a characteristic of either a product or of an individual. In the present research, we make an assumption that an individual's 'food involvement' is a somewhat stable characteristic and we hypothesized that involvement with foods would vary between individuals, that individuals who are more highly involved with food would be better able to discriminate between a set of food samples than would less food involved individuals, and that this discrimination would operate both in affective and perceptive relative judgments. Using standard scale construction techniques, we developed a measure of the characteristic of food involvement, based on activities relating to food acquisition, preparation, cooking, eating and disposal. After several iterations, a final 12-item measure was found to have good test-retest reliability and internal consistency within two subscales. A behavioral validation study demonstrated that measures of food involvement were associated with discrimination and hedonic ratings for a range of foods in a laboratory setting. These findings suggest that food involvement, as measured by the Food Involvement Scale, may be an important mediator to consider when undertaking research with food and food habits.

  15. E-Learning: A Means to Increase Learner Involvement in Research

    Science.gov (United States)

    de Beer, Marie; Mason, Roger B.

    2014-01-01

    This paper investigates a method for increasing the involvement of marketing fourth year learners in academic research, by encouraging greater participation in, and commitment to, their research project in the Applied Marketing IV subject. It is assumed that greater involvement will result in a greater pass rate. The main reasons for this lack of…

  16. Research Attitudes and Involvement among Medical Students and Students of Allied Health Occupations.

    Science.gov (United States)

    Delin, Catherine R.

    1994-01-01

    Medicine has a long research tradition, whereas allied health areas have only recently become involved in research. A questionnaire study was conducted to investigate the attitudes to research of a total of 314 students of medicine, dentistry, occupational therapy, physiotherapy, and nursing courses on the city campuses of two South Australian…

  17. Ethical practice in internet research involving vulnerable people: lessons from a self-harm discussion forum study (SharpTalk).

    Science.gov (United States)

    Sharkey, Siobhan; Jones, Ray; Smithson, Janet; Hewis, Elaine; Emmens, Tobit; Ford, Tamsin; Owens, Christabel

    2011-12-01

    The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a 'report' button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.

  18. The impact of patient and public involvement in the work of the Dementias & Neurodegenerative Diseases Research Network (DeNDRoN): case studies.

    Science.gov (United States)

    Iliffe, Steve; McGrath, Terry; Mitchell, Douglas

    2013-12-01

    (i) To describe patient and public involvement (PPI) in a network promoting research in dementia and neurodegenerative diseases, in terms of activity at the different stages of the research cycle and within the different levels of the research network. (ii) To use case studies to try and answer the question: what benefits (if any) does PPI in research bring to the research process? PPI in health research is a central part of government policy, but the evidence base underpinning it needs strengthening. PPI allows exploration of feasibility, acceptability and relevance of hypotheses, assists in the precise definition of research questions and increases accrual to studies. However, the measurement of outcomes is methodologically difficult, because the impact of lay researchers may occur through team interactions and be difficult to untangle from the efforts of professional researchers. Opportunities for PPI in rapidly progressive diseases may be limited, and involvement of people with marked cognitive impairment is particularly challenging. (i) Description of PPI within the DeNDRoN network. (ii) Case studies of three research projects which asked for extra help from centrally organized PPI. PPI in research projects on the DeNDRoN portfolio may function at different levels, occurring at project, local research network and national level. Case studies of three research projects show different roles for PPI in research and different functions for centrally organized PPI, including contribution to remedial action in studies that are not recruiting to target, solving problems because of the complexity and sensitivity of the research topic, and linking researchers to PPI resources. The case studies suggest that centrally organized PPI can have 'diagnostic' and remedial functions in studies that are struggling to recruit and serve as reinforcement for study-level PPI in the complex and sensitive research topics that are typical in neurodegenerative diseases research. PPI may

  19. Strategies for involving undergraduates in mentored research (Invited)

    Science.gov (United States)

    Marin-Spiotta, E.

    2013-12-01

    Early engagement in research can transform the undergraduate experience and has a positive effect on minority student recruitment to graduate school. Multiple strategies used to involve undergraduates in research at a large R1 university are presented. During my first four years as an assistant professor, my lab has hosted 14 undergraduates, 9 of them women and 4 of them Hispanic. Institutional support has been critical for undergraduate student involvement. UW supports a research program for incoming underrepresented students. An advantage of this program is very early research participation, with the opportunity for long-term training. One disadvantage is that many first year students have not yet identified their interests. The Biology major also requires students to complete an independent project, which culminates in a research symposium. Competitive research fellowships and grants are available for students to conduct work under faculty mentorship. We have been successful at keeping students on even when their majors are very different from our research discipline, mainly by providing flexibility and a welcoming lab environment. This mentoring culture is strongly fostered by graduate student interest and involvement with all undergraduates as well as active mentor training. By offering multiple pathways for involvement, we can accommodate students' changing schedules and priorities as well as changing lab needs. Students can volunteer, receive course credit, conduct an independent project or honors thesis, contribute to an existing project, do lab work or write a literature review, work with one mentor or on multiple projects. We often provide employment over the summer and subsequent semesters for continuing students. Some will increase their commitment over time and work more closely with me. Others reduce down to a few hours a week as they gain experience elsewhere. Most students stay multiple semesters and multiple years because they 'enjoy being in the

  20. Assessing the Influence of Researcher-Partner Involvement on the Process and Outcomes of Participatory Research in Autism Spectrum Disorder and Neurodevelopmental Disorders: A Scoping Review

    Science.gov (United States)

    Jivraj, Jamil; Sacrey, Lori-Ann; Newton, Amanda; Nicholas, David; Zwaigenbaum, Lonnie

    2014-01-01

    Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify…

  1. Accessible Article: Involving People with Learning Disabilities in Research

    Science.gov (United States)

    Garbutt, Ruth; Tattersall, John; Dunn, Jo; Boycott-Garnett, Rachel

    2010-01-01

    This is an article that talks about our research about sex and relationships for people with learning disabilities. It talks about how people with learning disabilities have been fully involved in the research. (Contains 2 footnotes.)

  2. Involving the public in epidemiological public health research: a qualitative study of public and stakeholder involvement in evaluation of a population-wide natural policy experiment.

    Science.gov (United States)

    Anderson de Cuevas, Rachel; Nylén, Lotta; Burström, Bo; Whitehead, Margaret

    2018-04-20

    Public involvement in research is considered good practice by European funders; however, evidence of its research impact is sparse, particularly in relation to large-scale epidemiological research. To explore what difference public and stakeholder involvement made to the interpretation of findings from an evaluation of a natural policy experiment to influence the wider social determinants of health: 'Flexicurity'. Stockholm County, Sweden. Members of the public from different occupational groups represented by blue-collar and white-collar trade union representatives. Also, members of three stakeholder groups: the Swedish national employment agency; an employers' association and politicians sitting on a national labour market committee. Total: 17 participants. Qualitative study of process and outcomes of public and stakeholder participation in four focused workshops on the interpretation of initial findings from the flexicurity evaluation. New insights from participants benefiting the interpretation of our research findings or conceptualisation of future research. Participants sensed more drastic and nuanced change in the Swedish welfare system over recent decades than was evident from our literature reviews and policy analysis. They also elaborated hidden developments in the Swedish labour market that were increasingly leading to 'insiders' and 'outsiders', with differing experiences and consequences for financial and job security. Their explanation of the differential effects of the various collective agreements for different occupational groups was new and raised further potential research questions. Their first-hand experience provided new insights into how changes to the social protection system were contributing to the increasing trends in poverty among unemployed people with limiting long-standing illness. The politicians provided further reasoning behind some of the policy changes and their intended and unintended consequences. These insights fed into

  3. Student involvement and research for the nuclear industry

    International Nuclear Information System (INIS)

    Ginniff, M.E.

    1980-01-01

    Nuclear engineering is one of the modern and rapidly advancing technologies. Those already involved in it are continually updating their knowledge to keep abreast of the developments. Of course the sound basic principles of engineering still apply but the scene of application can be transformed in a few years. In fact, because of this, many engineers from more traditional industries often express the view that presently the total range of nuclear engineering is research and development. How can students be trained for such a rapidly advancing technology. Is not the answer early involvement. Effective early involvement for students can only come about by the close co-operation and involvement of the staff of universities and industry. The theme is developed. (author)

  4. Community perspectives on research consent involving vulnerable children in Western Kenya.

    Science.gov (United States)

    Vreeman, Rachel; Kamaara, Eunice; Kamanda, Allan; Ayuku, David; Nyandiko, Winstone; Atwoli, Lukoye; Ayaya, Samuel; Gisore, Peter; Scanlon, Michael; Braitstein, Paula

    2012-10-01

    Involving vulnerable pediatric populations in international research requires culturally appropriate ethical protections. We sought to use mabaraza, traditional East African community assemblies, to understand how a community in western Kenya viewed participation of children in health research and informed consent and assent processes. Results from 108 participants revealed generally positive attitudes towards involving vulnerable children in research, largely because they assumed children would directly benefit. Consent from parents or guardians was understood as necessary for participation while gaining child assent was not. They felt other caregivers, community leaders, and even community assemblies could participate in the consent process. Community members believed research involving orphans and street children could benefit these vulnerable populations, but would require special processes for consent.

  5. Biomedical research involving patients with disorders of consciousness: ethical and legal dimensions

    Directory of Open Access Journals (Sweden)

    Michele Farisco

    2014-09-01

    Full Text Available The directive 2001/20/UE and the research involving patients with docs. Research involving patients with disorders of consciousness (DOCs deserves special ethical and legal attention because of its Janus-faced nature. On the one hand, it raises concerns about the risk to expose the involved subjects to disproportionate risks not respecting their individual dignity, particularly their right to be cared for; on the other hand, research is an essential tool in order to improve the clinical condition of patients with DOCs. The present paper concerns the ethical and legal dimensions of biomedical research involving patients with disorders of consciousness. In particular, it focuses on informed consent to experimental treatments, which is a challenging issue both from an ethical and legal point of view. The first part reads the Directive 2001/20/EU in the light of the experimentation of patients with DOCs, and suggests a revision in order to better assess the issue of informed consent. The particular case of informed consent for observational studies of non-communicative patients. The second part presents an informed consent form for studies through video-recording of patients unable to communicate their own consent. This form has been elaborated by the bioethics unit of the project "Review of the nosography of vegetative states: application of methods of behavioral analysis to individuals in coma or vegetative state" developed at the Italian National Institute of Health. Relevance of the suggested form. The paper describes the conceptual framework of the form for informed consent to studies through video-recoding, which is a relevant example of what issues should be included in an informed consent for any type of studies through video-recording of patients unable to express their own consent. The article has been sent on November the 7th 2013, before the adoption of the Regulation (EU no. 536/2014 (and consequent abrogation of the Directive 2001

  6. Patient involvement in a scientific advisory process: setting the research agenda for medical products.

    NARCIS (Netherlands)

    Elberse, J.E.; Pittens, C.A.C.M.; de Cock Buning, J.T.; Broerse, J.E.W.

    2012-01-01

    Patient involvement in scientific advisory processes could lead to more societally relevant advice. This article describes a case study wherein the Health Council of the Netherlands involved patient groups in an advisory process with a predefined focus: setting a research agenda for medical products

  7. Embedding a Recovery Orientation into Neuroscience Research: Involving People with a Lived Experience in Research Activity.

    Science.gov (United States)

    Stratford, Anthony; Brophy, Lisa; Castle, David; Harvey, Carol; Robertson, Joanne; Corlett, Philip; Davidson, Larry; Everall, Ian

    2016-03-01

    This paper highlights the importance and value of involving people with a lived experience of mental ill health and recovery in neuroscience research activity. In this era of recovery oriented service delivery, involving people with the lived experience of mental illness in neuroscience research extends beyond their participation as "subjects". The recovery paradigm reconceptualises people with the lived experience of mental ill health as experts by experience. To support this contribution, local policies and procedures, recovery-oriented training for neuroscience researchers, and dialogue about the practical applications of neuroscience research, are required.

  8. The Article Idea Chart: A participatory action research tool to aid involvement in dissemination

    Directory of Open Access Journals (Sweden)

    Cheryl Forchuk

    2014-06-01

    Full Text Available Participatory-action research encourages the involvement of all key stakeholders in the research process and is especially well suited to mental health research. Previous literature outlines the importance of engaging stakeholders in the development of research questions and methodologies, but little has been written about ensuring the involvement of all stakeholders (especially non-academic members in dissemination opportunities such as publication development. The Article Idea Chart was developed as a specific methodology for engaging all stakeholders in data analysis and publication development. It has been successfully utilised in a number of studies and is an effective tool for ensuring the dissemination process of participatory-action research results is both inclusive and transparent to all team members, regardless of stakeholder group. Keywords: participatory-action research, mental health, dissemination, community capacity building, publications, authorship

  9. Experiences of service users involved in recruitment for nursing courses: A phenomenological research study.

    Science.gov (United States)

    Stevens, Katie; Bernal, Cathy; Devis, Kate; Southgate, Andrew

    2017-11-01

    The aim of this study was to gain insight into service users' experiences of participating in recruitment for Adult, Mental Health and Child nursing studies at the authors' university; to establish potential motivations behind such participation; and to make suggestions for improved future practice. The involvement of service users in nurse education and recruitment has for some years been required by the Nursing and Midwifery Council, but there is a dearth of publications on the meaning of that involvement to participating service users. It is hoped that this study will contribute to this body of knowledge. A phenomenological approach was selected, field-specific focus groups of service users being facilitated using a semi-structured interview format; these were audio recorded and transcribed. The data was analysed using thematic analysis. Participation was subject to the service users having been involved in recruitment to nursing studies at the authors' university and the focus groups took place either at the university or at the child participants' school. Themes identified demonstrated largely positive experiences and a sense of meaningful involvement for all concerned. Findings indicated a close link between the values of the participants and those of the wider NHS, benefits to a sense of wellbeing and achievement, as well as the need for greater ownership of the recruitment process by service users. Potential lessons for academics wishing to promote greater service user involvement in student recruitment are articulated. Copyright © 2017 Elsevier Ltd. All rights reserved.

  10. Being useful: achieving indigenous youth involvement in a community-based participatory research project in Alaska

    Directory of Open Access Journals (Sweden)

    Tara Ford

    2012-05-01

    Full Text Available Objectives. To report on a participatory research process in southwest Alaska focusing on youth involvement as a means to facilitate health promotion. We propose youth-guided community-based participatory research (CBPR as way to involve young people in health promotion and prevention strategizing as part of translational science practice at the community-level. Study design. We utilized a CBPR approach that allowed youth to contribute at all stages. Methods. Implementation of the CBPR approach involved the advancement of three key strategies including: (a the local steering committee made up of youth, tribal leaders, and elders, (b youth-researcher partnerships, and (c youth action-groups to translate findings. Results. The addition of a local youth-action and translation group to the CBPR process in the southwest Alaska site represents an innovative strategy for disseminating findings to youth from a research project that focuses on youth resilience and wellbeing. This strategy drew from two community-based action activities: (a being useful by helping elders and (b being proud of our village. Conclusions. In our study, youth informed the research process at every stage, but most significantly youth guided the translation and application of the research findings at the community level. Findings from the research project were translated by youth into serviceable action in the community where they live. The research created an experience for youth to spend time engaged in activities that, from their perspectives, are important and contribute to their wellbeing and healthy living. Youth-guided CBPR meant involving youth in the process of not only understanding the research process but living through it as well.

  11. Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis.

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Butler, Gary

    2010-06-01

    People with learning disabilities have been included in research as co-researchers since the 1990s. However, there is limited literature about the processes of involving people with learning disabilities in the more intellectual and analytical stages of the research process. To examine the potential contribution of people with learning disabilities to data analysis in qualitative research. This article is a reflection on one research experience. The two authors include one researcher with and one without learning disabilities. They each describe their experience and understanding of user involvement in analysing the data of an ethnographic study of people with learning disabilities who had cancer. The researcher with learning disabilities was given extensive vignettes and extracts from the research field notes, and was supported to extract themes, which were cross-compared with the analysis of other members of the research team. The researcher with learning disabilities coped well with the emotive content of the data and with the additional support provided, he was able to extract themes that added validity to the overall analysis. His contribution complemented those of the other members of the research team. There were unexpected benefits, in particular, in terms of a more reciprocal and supportive relationship between the two researchers. It is possible and valuable to extend involvement to data analysis, but to avoid tokenism and maintain academic rigour, there must be a clear rationale for such involvement. Extra support, time and costs must be planned for.

  12. "…Their Opinions Mean Something": Care Staff's Attitudes to Health Research Involving People with Intellectual Disabilities

    Science.gov (United States)

    Hall, Natalie; Durand, Marie-Anne; Mengoni, Silvana E.

    2017-01-01

    Background: Despite experiencing health inequalities, people with intellectual disabilities are under-represented in health research. Previous research has identified barriers but has typically focused on under-recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual…

  13. Participatory action research: involving students in parent education.

    Science.gov (United States)

    Fowler, Cathrine; Wu, Cynthia; Lam, Winsome

    2014-01-01

    Competition for scarce clinical placements has increased requiring new and innovative models to be developed to meet the growing need. A participatory action research project was used to provide a community nursing clinical experience of involvement in parent education. Nine Hong Kong nursing students self-selected to participate in the project to implement a parenting program called Parenting Young Children in a Digital World. Three project cycles were used: needs identification, skills development and program implementation. Students were fully involved in each cycle's planning, action and reflection phase. Qualitative and quantitative data were collected to inform the project. The overall outcome of the project was the provision of a rich and viable clinical placement experience that created significant learning opportunities for the students and researchers. This paper will explore the student's participation in this PAR project as an innovative clinical practice opportunity. Copyright © 2013 Elsevier Ltd. All rights reserved.

  14. How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation.

    Science.gov (United States)

    Wilson, Patricia; Mathie, Elspeth; Poland, Fiona; Keenan, Julia; Howe, Amanda; Munday, Diane; Kendall, Sally; Cowe, Marion; Staniszewska, Sophie; Goodman, Claire

    2018-04-01

    Objectives To explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England. Methods Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects. Results In research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as 'authentically' lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science. Conclusions While patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.

  15. Involving people with early-stage dementia in qualitative research about their lifeworld perspectives

    DEFF Research Database (Denmark)

    Thoft, Diana Schack

    Involving people with early-stage dementia in qualitative research about their lifeworld perspectives......Involving people with early-stage dementia in qualitative research about their lifeworld perspectives...

  16. Purchase Involvement of New Car Buyers: A Descriptive Study

    OpenAIRE

    Joseph Abramson; Peggy D. Brewer

    1993-01-01

    The purchase of a new automobile is often cited as the quintessence of a high involvement purchase decision; the financial risks and personal relevance of the purchase dictate that car buyers put forth much effort before making a decision. In this research such efforts as dealers shopped, brands shopped, and information sources used are studied in a large sample of new car buyers in West Virginia. The purchase behavior of respondents in this study seems more like low-involvement than high inv...

  17. Patient involvement in research programming and implementation: a responsive evaluation of the Dialogue Model for research agenda setting

    NARCIS (Netherlands)

    Abma, T.A.; Pittens, C.A.C.M.; Visse, M.; Elberse, J.E.; Broerse, J.E.W.

    2015-01-01

    Background: The Dialogue Model for research agenda-setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research

  18. Reporting of ethical protection in recent oral and maxillofacial surgery research involving human subjects.

    Science.gov (United States)

    Pitak-Arnnop, P; Sader, R; Hervé, C; Dhanuthai, K; Bertrand, J-Ch; Hemprich, A

    2009-07-01

    This retrospective observational study investigated the frequency of reporting ethical approval and informed consent in recently published oral and maxillofacial surgery (OMS) research involving human subjects. All research involving human subjects published in the International Journal of Oral and Maxillofacial Surgery, Journal of Oral and Maxillofacial Surgery, British Journal of Oral and Maxillofacial Surgery, and Journal of Cranio-Maxillofacial Surgery during January to June 2005-2007 were analysed for disclosure of ethical approval by a local ethical committee and obtaining informed consent from the subjects. 534 articles were identified; ethical approval was documented in 118 (22%) and individual patient consent in 135 (25%). 355 reports (67%) did not include a statement on ethical approval or informed consent and only 74 reports (14%) disclosed statements of both. Ethical documentation in retrospective and observational studies was scant; 12% of randomised controlled trials and 38% of non-random trials did not report both of ethical protections. Most recent OMS publications involving humans failed to mention ethical review or subjects' consent. Authors must adhere to the international research ethics guidelines and journal instructions, while editors should play a gatekeeper role to protect research participants, uphold scientific integrity and maintain public trust in the experimental process and OMS profession.

  19. Public involvement in the dose reconstruction study: the colorado story

    International Nuclear Information System (INIS)

    Morin, Norma C.; Lockhart, Ann J.

    2000-01-01

    Public involvement was a critical component for building awareness, trust, and credibility for the dose reconstruction study for the Rocky Flats Nuclear Weapons Facility in Colorado. The research team developed a process to inform, involve, and encourage public participation over the nine-year study period. Key affected and interested groups with a legitimate stake in the study were identified and invited to identify concerns and offer suggestions for the study. In many cases, the public actually provided direction for the research. Many issues were studied more in-depth as result of public concern. Proactive community outreach was undertaken; quarterly public meetings and workshops were held to inform the public about the study's progress and to hear their comments. Quarterly newsletters were mailed to stake holders. A speaker's bureau was established and more than 50 presentations were made to 1,500 community members in various civic, business, neighborhood, and technical groups. Fact sheets, citizen summaries of technical reports, technical topic papers, and a video were developed to provide a complete overview of the studies and the findings at the conclusion of the project. The video was provided to local cable television stations, and publications were taken to local libraries. A web site was developed to allow the public to readily access information and to order technical reports. Public comments on draft technical reports were solicited; questions and concerns were addressed and investigated. The staff answered citizen calls, and the research team responded in writing to more than 200 issues raised by very concerned citizens. In addition, a citizen's group was formed in 1992 to conduct an independent study of plutonium levels found in soil samples collected around Rocky Flats. Made up of homeowners, public interest groups, local health departments, interested citizens, and Health Advisory Panel members, the committee arranged for sampling and analysis of

  20. Undergraduate Research Involving Deaf and Hard-of-Hearing Students in Interdisciplinary Science Projects

    Directory of Open Access Journals (Sweden)

    Todd Pagano

    2015-05-01

    Full Text Available Scientific undergraduate research in higher education often yields positive outcomes for student and faculty member participants alike, with underrepresented students often showing even more substantial gains (academic, professional, and personal as a result of the experience. Significant success can be realized when involving deaf and hard-of-hearing (d/hh undergraduate students, who are also vastly underrepresented in the sciences, in interdisciplinary research projects. Even d/hh Associate degree level students and those in the first two years of their postsecondary careers can contribute to, and benefit from, the research process when faculty mentors properly plan/design projects. We discuss strategies, including the dissemination/communication of research results, for involving these students in research groups with different communication dynamics and share both findings of our research program and examples of successful chemical and biological research projects that have involved d/hh undergraduate students. We hope to stimulate a renewed interest in encouraging diversity and involving students with disabilities into higher education research experiences globally and across multiple scientific disciplines, thus strengthening the education and career pipeline of these students.

  1. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards.

    Science.gov (United States)

    Pandya-Wood, Raksha; Barron, Duncan S; Elliott, Jim

    2017-01-01

    Researchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start researchers must seek approval from a Research Ethics Committee, which will assess whether the study is going to be safe and ethical for patients or healthy volunteers to take part in. The process of ethical review does not consider how researchers work with patients and the public early on to design their studies. Furthermore, there is no requirement for researchers to seek ethical approval for public involvement. However, in our work advising researchers about public involvement we have found that the ways in which researchers involve the public in the design of their studies are sometimes unintentionally unethical, and this is the focus of our paper. We have observed ten areas where ethical issues may arise because of the actions researchers may or may not take and which might consequently have a negative impact. Therefore, we have used these observations to develop a "framework" to help researchers and the public work together at the early design stage in ways that are ethical. Our intention for the framework is to help researchers be mindful of these ten areas and how easily ethical issues can arise. The framework suggests some ways to overcome the potential issues in each of the ten areas. The ten areas are: 1) Allocating sufficient time for public involvement; 2) Avoiding tokenism; 3) Registering research design stage public involvement work with NHS Research & Development Trust Office at earliest opportunity; 4) Communicating clearly from the outset; 5) Entitling public contributors to stop their involvement for any unstated reasons; 6) Operating fairness of opportunity; 7) Differentiating qualitative research methods and public involvement activities; 8) Working sensitively; 9) Being conscious of confidentiality and 10) Valuing, acknowledging and rewarding

  2. Improving Hawaiian and Filipino involvement in clinical research opportunities: qualitative findings from Hawai'i.

    Science.gov (United States)

    Gollin, Lisa X; Harrigan, Rosanne C; Calderón, José L; Perez, John; Easa, David

    2005-01-01

    Investigate the barriers to participation in medical research that involves Asian and Pacific Islander (API) populations in Hawai'i. Fifty people (27 Filipinos, 23 Hawaiian/Pacific Islanders) in five different communities on Oahu. Nine focus groups with an ethnically matched moderator were held to explore people's feelings, problems, and recommendations regarding medical research. Sessions were audiotaped, transcribed, and qualitatively analyzed with the constant comparison method. Only 12% of study participants said that they absolutely would not participate in a clinical study. Most agreed that research is vital. Filipino participants were more optimistic about the safety and value of joining in medical research. Hawaiian groups were more hesitant and fearful. Reasons for nonparticipation included negative feelings about the purpose and intent of clinical trials and language and cultural barriers. Suggestions on how to encourage API populations to participate in research investigations included improving peoples' understanding of the benefits to family and community. Hawaiian and Filipino groups differed only slightly in their assessments of the type of research needed in their communities. Recruitment campaigns must improve people's awareness of the process of informed consent, research safeguards, and benefits to family and community. Attention should focus on K-12 health education to use members of the younger generations to access and educate elders, involving persons with medical research experience as a recruitment resource, returning results to study participants, and increasing the number of healthcare professionals and researchers that are culturally and linguistically matched to the community.

  3. The benefits of patient involvement for translational research

    NARCIS (Netherlands)

    van der Scheer, Lieke; Garcia, Elisa; van der Laan, A.L.; van der Burg, Simone; Boenink, Marianne

    The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement (‘translation’) of basic scientific findings to relevant and

  4. The Benefits of Patient Involvement for Translational Research

    NARCIS (Netherlands)

    Scheer, L. van der; Garcia, E.; Laan, A.L. van der; Burg, S. van der; Boenink, M.

    2017-01-01

    The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement ('translation') of basic scientific findings to relevant and

  5. Data collection using open access technology in multicentre operational research involving patient interviews.

    Science.gov (United States)

    Shewade, H D; Chadha, S S; Gupta, V; Tripathy, J P; Satyanarayana, S; Sagili, K; Mohanty, S; Bera, O P; Pandey, P; Rajeswaran, P; Jayaraman, G; Santhappan, A; Bajpai, U N; Mamatha, A M; Maiser, R; Naqvi, A J; Pandurangan, S; Nath, S; Ghule, V H; Das, A; Prasad, B M; Biswas, M; Singh, G; Mallick, G; Jeyakumar Jaisingh, A J; Rao, R; Kumar, A M V

    2017-03-21

    Conducting multicentre operational research is challenging due to issues related to the logistics of travel, training, supervision, monitoring and troubleshooting support. This is even more burdensome in resource-constrained settings and if the research includes patient interviews. In this article, we describe an innovative model that uses open access tools such as Dropbox, TeamViewer and CamScanner for efficient, quality-assured data collection in an ongoing multicentre operational research study involving record review and patient interviews. The tools used for data collection have been shared for adaptation and use by other researchers.

  6. Students' Involvement in Faculty Research: Ethical and Methodological Issues

    Directory of Open Access Journals (Sweden)

    Linda M. Ferguson

    2004-12-01

    Full Text Available Faculty who engage students as participants in their qualitative research often encounter methodological and ethical problems. Ethical issues arise from the fiduciary relationship between faculty and their students, and violations of that relationship occur when the educator has a dual role as researcher with those students. Methodological issues arise from research designs to address these ethical issues. This conflict is particularly evident in faculty research on pedagogy in their own disciplines, for which students are necessary as participants but are captive in the relationship. In this article, the authors explore the issues of double agency when faculty involve students as participants in their research.

  7. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study.

    Science.gov (United States)

    Crocker, Joanna C; Boylan, Anne-Marie; Bostock, Jennifer; Locock, Louise

    2017-06-01

    There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. Qualitative interview study. Thirty-eight PPI contributors involved in health research across the UK. Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the 'expert in lived experience', the 'creative outsider', the 'free challenger', the 'bridger', the 'motivator' and the 'passive presence'. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors' potential impact and their motivation to stay involved. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

  8. Patient Involvement in Safe Delivery: A Qualitative Study.

    Science.gov (United States)

    Olfati, Forozun; Asefzadeh, Saeid; Changizi, Nasrin; Keramat, Afsaneh; Yunesian, Masud

    2015-09-28

    Patient involvement in safe delivery planning is considered important yet not widely practiced. The present study aimed at identifythe factors that affect patient involvementin safe delivery, as recommended by parturient women. This study was part of a qualitative research conducted by content analysis method and purposive sampling in 2013.The data were collected through 63 semi-structured interviews in4 hospitalsand analyzed using thematic content analysis. The participants in this research were women before discharge and after delivery. Findings were analyzed using Colaizzi's method. Four categories of factors that could affect patient involvement in safe delivery emerged from our analysis: patient-related (true and false beliefs, literacy, privacy, respect for patient), illness-related (pain, type of delivery, patient safety incidents), health care professional-relatedand task-related factors (behavior, monitoring &training), health care setting-related (financial aspects, facilities). More research is needed to explore the factors affecting the participation of mothers. It is therefore, recommended to: 1) take notice of mother education, their husbands, midwives and specialists; 2) provide pregnant women with insurance coverage from the outset of pregnancy, especially during prenatal period; 3) form a labor pain committee consisting of midwives, obstetricians, and anesthesiologists in order to identify the preferred painless labor methods based on the existing facilities and conditions, 4) carry out research on observing patients' privacy and dignity; 5) pay more attention on the factors affecting cesarean.

  9. Involving the public in mental health and learning disability research: Can we, should we, do we?

    Science.gov (United States)

    Paul, C; Holt, J

    2017-10-01

    WHAT IS KNOWN ON THE SUBJECT?: UK health policy is clear that researchers should involve the public throughout the research process. The public, including patients, carers and/or local citizens can bring a different and valuable perspective to the research process and improve the quality of research undertaken. Conducting health research is demanding with tight deadlines and scarce resources. This can make involving the public in research very challenging. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This is the first time the attitudes of researchers working in mental health and learning disability services towards PPI have been investigated. The principles of service user involvement in mental health and learning disability services may support PPI in research as a tool of collaboration and empowerment. This article extends our understanding of the cultural and attitudinal barriers to implementing PPI guidelines in mental health and learning disability services. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Researchers in mental health and learning disability services need to champion, share and publish effective involvement work. Structural barriers to PPI work should be addressed locally and successful strategies shared nationally and internationally. Where PPI guidelines are being developed, attention needs to be paid to cultural factors in the research community to win "hearts and minds" and support the effective integration of PPI across the whole research process. Introduction Patient and public involvement (PPI) is integral to UK health research guidance; however, implementation is inconsistent. There is little research into the attitudes of NHS health researchers towards PPI. Aim This study explored the attitude of researchers working in mental health and learning disability services in the UK towards PPI in health research. Method Using a qualitative methodology, semi-structured interviews were conducted with a purposive sample of eight researchers. A

  10. Patient Involvement in Safe Delivery: A Qualitative Study

    OpenAIRE

    Olfati, Forozun; Asefzadeh, Saeid; Changizi, Nasrin; Keramat, Afsaneh; Yunesian, Masud

    2015-01-01

    Introduction: Patient involvement in safe delivery planning is considered important yet not widely practiced. The present study aimed at identifythe factors that affect patient involvementin safe delivery, as recommended by parturient women. Methods: This study was part of a qualitative research conducted by content analysis method and purposive sampling in 2013. The data were collected through 63 semi-structured interviews in4 hospitalsand analyzed using thematic content analysis. The partic...

  11. Participatory public health systems research: value of community involvement in a study series in mental health emergency preparedness.

    Science.gov (United States)

    McCabe, O Lee; Marum, Felicity; Semon, Natalie; Mosley, Adrian; Gwon, Howard; Perry, Charlene; Moore, Suzanne Straub; Links, Jonathan M

    2012-01-01

    Concerns have arisen over recent years about the absence of empirically derived evidence on which to base policy and practice in the public health system, in general, and to meet the challenge of public health emergency preparedness, in particular. Related issues include the challenge of disaster-caused, behavioral health surge, and the frequent exclusion of populations from studies that the research is meant to aid. To characterize the contributions of nonacademic collaborators to a series of projects validating a set of interventions to enhance capacity and competency of public mental health preparedness planning and response. Urban, suburban, and rural communities of the state of Maryland and rural communities of the state of Iowa. Study partners and participants (both of this project and the studies examined) were representatives of academic health centers (AHCs), local health departments (LHDs), and faith-based organizations (FBOs) and their communities. A multiple-project, case study analysis was conducted, that is, four research projects implemented by the authors from 2005 through 2011 to determine the types and impact of contributions made by nonacademic collaborators to those projects. The analysis involved reviewing research records, conceptualizing contributions (and providing examples) for government, faith, and (nonacademic) institutional collaborators. Ten areas were identified where partners made valuable contributions to the study series; these "value-areas" were as follows: 1) leadership and management of the projects; 2) formulation and refinement of research topics, aims, etc; 3) recruitment and retention of participants; 4) design and enhancement of interventions; 5) delivery of interventions; 6) collection, analysis, and interpretation of data; 7) dissemination of findings; 8) ensuring sustainability of faith/government preparedness planning relationships; 9) optimizing scalability and portability of the model; and 10) facilitating

  12. Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research.

    Science.gov (United States)

    Walmsley, Jan

    2004-03-01

    In this paper the author considers the lessons to be drawn from what is termed "inclusive" learning disability research for user involvement around health improvement. Inclusive learning disability research refers to research where people with learning difficulties (intellectual disability) are involved as active participants, as opposed to passive subjects. There is by now a considerable body of such research, developed over the past 25 years. From the review, the author draws attention to areas which can inform practice in involvement of users in a way that adds value.

  13. Partnering Research Involving Mentoring and Education (PRIME) in Prostate Cancer

    National Research Council Canada - National Science Library

    Price, Marva M

    2007-01-01

    Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) is a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...

  14. Partnering Research Involving Mentoring and Education (PRIME) in Prostate Cancer

    National Research Council Canada - National Science Library

    Price, Marva M

    2006-01-01

    Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) is a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...

  15. Partnering Research Involving Mentoring and Education (PRIME) in Prostate Cancer

    National Research Council Canada - National Science Library

    Price, Marva M

    2008-01-01

    Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) was a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...

  16. 78 FR 10538 - Protections for Subjects in Human Research Involving Pesticides

    Science.gov (United States)

    2013-02-14

    ... involving intentional exposure of children or of pregnant or nursing women, unless relying on the data is crucial to a decision that would impose a more stringent regulatory restriction that would improve... itself to conduct or support any research involving intentional exposure of pregnant or nursing women or...

  17. Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)

    DEFF Research Database (Denmark)

    Gove, Dianne; Diaz-Ponce, Ana; Georges, Jean

    2018-01-01

    This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration...... with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote...

  18. 76 FR 5735 - Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides

    Science.gov (United States)

    2011-02-02

    ... addressed in EPA science and ethics reviews of proposed and completed human research with pesticides, drawn..., which suggest ethical considerations relevant to evaluation of human studies. Third, Petitioners argued... Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides AGENCY...

  19. Service user involvement in research may lead to contrary rather than collaborative accounts: findings from a qualitative palliative care study.

    Science.gov (United States)

    Forbat, Liz; Hubbard, Gill

    2016-04-01

    The aim of this study was to explore what data emerge when former carergivers (co-researchers) are trained to interview current care-givers about their experiences. Despite a trend of involving service users in conducting research interviews, there have been few examinations of how and whether a common service user identity has an impact on the data generated. Four co-researchers were recruited, trained and supported to conduct qualitative interviews with 11 current carers of people receiving palliative services. Conversation analysis was used to examine the conversational characteristics of the research interviews. Data were collected in 2010-2011. Conversation analysis identified that interactional difficulties were evident across the data. When co-researchers talked about their own experiences as carers, interviewees frequently changed the topic of conversation, thereby closing-down opportunities for further disclosure or elaboration from the interviewee about the original topic. Conversation analysis identifies how caregiving identities are co-constructed and points where there is agreement and disagreement in the co-construction. © 2015 John Wiley & Sons Ltd.

  20. Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya.

    Science.gov (United States)

    Molyneux, Sassy; Tsofa, Benjamin; Barasa, Edwine; Nyikuri, Mary Muyoka; Waweru, Evelyn Wanjiku; Goodman, Catherine; Gilson, Lucy

    2016-12-01

    There is a growing interest in the ethics of Health Policy and Systems Research (HPSR), and especially in areas that have particular ethical salience across HPSR. Hyder et al (2014) provide an initial framework to consider this, and call for more conceptual and empirical work. In this paper, we respond by examining the ethical issues that arose for researchers over the course of conducting three HPSR studies in Kenya in which health managers and providers were key participants. All three studies involved qualitative work including observations and individual and group interviews. Many of the ethical dilemmas researchers faced only emerged over the course of the fieldwork, or on completion, and were related to interactions and relationships between individuals operating at different levels or positions in health/research systems. The dilemmas reveal significant ethical challenges for these forms of HPSR, and show that potential 'solutions' to dilemmas often lead to new issues and complications. Our experiences support the value of research ethics frameworks, and suggest that these can be enriched by incorporating careful consideration of context embedded social relations into research planning and conduct. Many of these essential relational elements of ethical practice, and of producing quality data, are given stronger emphasis in social science research ethics than in epidemiological, clinical or biomedical research ethics, and are particularly relevant where health systems are understood as social and political constructs. We conclude with practical and research implications. © 2016 The Authors Developing World Bioethics Published by John Wiley & Sons Ltd.

  1. Partners in projects: preparing for public involvement in health and social care research.

    Science.gov (United States)

    Parkes, Jacqueline H; Pyer, Michelle; Wray, Paula; Taylor, Jane

    2014-09-01

    In recent years, several UK and, international funders of health and social care related research have adopted the policy of requiring explicit evidence of the 'public' voice in all aspects of project design. For many academic researchers engaged within research, evaluations or audit projects, this formal requirement to actively engage members of the public will present them with both benefits and challenges to securing knowledgeable, skilled, and confident lay representation onto project teams. This could potentially lead to the exploitation of those individuals who are available, appropriately informed, and adequately prepared for such activities. Currently, much of the preparation of patients or members of the public for research involvement tends to be aligned to specific projects; however, with the call for greater active and meaningful involvement of lay representatives in future national and international funding applications, there is clearly a growing need to 'train' sufficient numbers of confident and competent representatives to meet this growing demand. This paper describes the development of a specifically designed research awareness training programme and underpinning theoretical model, which has been specifically designed to support active and meaningful lay involvement in research, evaluations and audit projects. Developed over a four year period, the course is a culmination of learning extracted from a series of four completed research projects, which have incorporated an element of public and patient involvement (PPI) training in their overall design. Crown Copyright © 2014. Published by Elsevier Ireland Ltd. All rights reserved.

  2. The power of symbolic capital in patient and public involvement in health research.

    Science.gov (United States)

    Locock, Louise; Boylan, Anne-Marie; Snow, Rosamund; Staniszewska, Sophie

    2017-10-01

    Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

  3. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study

    Science.gov (United States)

    Snape, D; Kirkham, J; Britten, N; Froggatt, K; Gradinger, F; Lobban, F; Popay, Jennie; Wyatt, K; Jacoby, Ann

    2014-01-01

    Objective To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. Background Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. Conclusions This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers

  4. A Research Framework for Understanding the Practical Impact of Family Involvement in the Juvenile Justice System: The Juvenile Justice Family Involvement Model.

    Science.gov (United States)

    Walker, Sarah Cusworth; Bishop, Asia S; Pullmann, Michael D; Bauer, Grace

    2015-12-01

    Family involvement is recognized as a critical element of service planning for children's mental health, welfare and education. For the juvenile justice system, however, parents' roles in this system are complex due to youths' legal rights, public safety, a process which can legally position parents as plaintiffs, and a historical legacy of blaming parents for youth indiscretions. Three recent national surveys of juvenile justice-involved parents reveal that the current paradigm elicits feelings of stress, shame and distrust among parents and is likely leading to worse outcomes for youth, families and communities. While research on the impact of family involvement in the justice system is starting to emerge, the field currently has no organizing framework to guide a research agenda, interpret outcomes or translate findings for practitioners. We propose a research framework for family involvement that is informed by a comprehensive review and content analysis of current, published arguments for family involvement in juvenile justice along with a synthesis of family involvement efforts in other child-serving systems. In this model, family involvement is presented as an ascending, ordinal concept beginning with (1) exclusion, and moving toward climates characterized by (2) information-giving, (3) information-eliciting and (4) full, decision-making partnerships. Specific examples of how courts and facilities might align with these levels are described. Further, the model makes predictions for how involvement will impact outcomes at multiple levels with applications for other child-serving systems.

  5. Framing the Undergraduate Research Experience: Discovery Involvement in Retailing Undergraduate Education

    Science.gov (United States)

    Sternquist, Brenda; Huddleston, Patricia; Fairhurst, Ann

    2018-01-01

    We provide an overview of ways to involve undergraduate business and retailing students in faculty research projects and discuss advantages of these student-faculty collaborations. We use Kolb's experiential learning cycle to provide a framework for creating an effective and engaging undergraduate research experience and use it to classify types…

  6. ORGANIC RESEARCH AND STAKEHOLDERS INVOLVEMENT: THE IFOAM EU REGIONAL GROUP CONTRIBUTION

    OpenAIRE

    Gonzalvez, Mr V; Schlueter, Mr M; Slabe, Ms A; Schmid, Mr O

    2006-01-01

    The paper presents the concepts, criteria, procedures and some methodologies to increase stakeholders involvement and participatioin in organic research Projects in the European Union, based on the experiencie and practise of the IFOAM EU Regional Group (IFOAM-EURG), in transnational Organic research Projects, enfatising in achivements, dificulties and trends for the future

  7. Conflicts of interest in research involving human beings.

    Science.gov (United States)

    Greco, Dirceu; Diniz, Nilza Maria

    2008-01-01

    Conflicts of interest are inherent to the majority of relationships among individuals and of these with companies and institutions and, certainly, research involving human beings is no exception. In relation to clinical research, the main focus of this manuscript, conflicts of interest occur at different levels and usually permeate among them: In the pharmaceutical industry in their decisions to invest to develop new products, especially vaccines and drugs, and also in relation to marketing of these products; Among the investigators the conflicts may be related to the financial gains to participate in pharma sponsored trials, or to the expected academic career boost attained with the publication of the results of the trials and also to personal interests such as the financial support for trips to international conferences. Often the participation of host country investigators is restricted to performing phase III or IV protocols developed abroad, many times with low scientific relevance, and even lower relevance to public health; Universities or research institutes themselves also have conflicts of interest, as the sponsored projects may help increase their budgets, both directly (taxes) and indirectly (e.g., improvement of physical infrastructure of laboratories or out patient clinics); For the trial volunteers in developing countries, and Brazil is no exception despite free and universal access to its health system, participation in clinical trials is many times seen as, and can really be, an unique opportunity of receiving better health care, better treatment by the health professionals, easier access to costly lab exams and also to receiving certain medications which would otherwise be difficult to have access to. In order to handle these conflicts of interest, Brazil has a well-established and respected legal support and ethical normatization. The latter is represented by Resolution 196/96 of the Brazilian National Research Ethics Committee (CONEP). This

  8. Forced migrants involved in setting the agenda and designing research to reduce impacts of complex emergencies: combining Swarm with patient and public involvement.

    Science.gov (United States)

    Brainard, Julii Suzanne; Al Assaf, Enana; Omasete, Judith; Leach, Steve; Hammer, Charlotte C; Hunter, Paul R

    2017-01-01

    The UK's National Institute for Health Research (NIHR) Health Protection Research Unit in Emergency Preparedness and Response was asked to undertake research on how to reduce the impact of complex national/international emergencies on public health. How to focus the research and decide on priority topics was challenging, given the nature of complex events. Using a type of structured brain-storming, the researchers identified the ongoing UK, European and international migration crisis as both complex and worthy of deeper research. To further focus the research, two representatives of forced migrant communities were invited to join the project team as patient and public (PPI) representatives. They attended regular project meetings, insightfully contributed to and advised on practical aspects of potential research areas. The representatives identified cultural obstacles and community needs and helped choose the final research study design, which was to interview forced migrants about their strategies to build emotional resilience and prevent mental illness. The representatives also helped design recruitment documents, and undertake recruitment and interviewer training. Many events with wide-ranging negative health impacts are notable for complexity: lack of predictability, non-linear feedback mechanisms and unexpected consequences. A multi-disciplinary research team was tasked with reducing the public health impacts from complex events, but without a pre-specified topic area or research design. This report describes using patient and public involvement within an adaptable but structured development process to set research objectives and aspects of implementation. An agile adaptive development approach, sometimes described as swarm , was used to identify possible research areas. Swarm is meant to quickly identify strengths and weaknesses of any candidate project, to accelerate early failure before resources are invested. When aspects of the European migration crisis

  9. Teaching Earth Sciences as an interdisciplinary subject: Novel module design involving research literature

    Science.gov (United States)

    Tong, Vincent C. H.

    2010-05-01

    The study of Earth Sciences requires an interdisciplinary approach as it involves understanding scientific knowledge originating from a wide spectrum of research areas. Not only does it include subjects ranging from, for instance, hydrogeology to deep crustal seismology and from climate science to oceanography, but it also has many direct applications in closely related disciplines such as environmental engineering and natural resources management. While research crossing traditional disciplinary boundaries in geosciences is becoming increasingly common, there is only limited integration of interdisciplinary research in the teaching of the subject. Given that the transition from undergraduate education based on subject modules to postgraduate interdisciplinary research is never easy, such integration is a highly desirable pedagogical approach at both undergraduate and postgraduate levels. My presentation is based on a recent teaching project involving novel design of an undergraduate course. The course is implemented in order to address the synergy between research and teaching (Tong, 2009). This project has been shown to be effective and successful in teaching geosciences undergraduates at the University of London. The module consists of studying core geophysical principles and linking them directly to a selection of recently published research papers in a wide range of interdisciplinary applications. Research reviewing and reporting techniques are systematically developed, practised and fully integrated into teaching of the core scientific theories. A fully-aligned assignment with a feedback website invites the students to reflect on the scientific knowledge and the study skills related to research literature they have acquired in the course. This teaching project has been recognized by a teaching award (http://www.clpd.bbk.ac.uk/staff/BETA). In this presentation, I will discuss how undergraduate teaching with a focus on research literature in Earth Sciences can

  10. Patient and public involvement in primary care research - an example of ensuring its sustainability.

    Science.gov (United States)

    Jinks, Clare; Carter, Pam; Rhodes, Carol; Taylor, Robert; Beech, Roger; Dziedzic, Krysia; Blackburn, Steven; Hughes, Rhian; Ong, Bie Nio

    2016-01-01

    The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes. We use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships. The paper concludes about the more general applicability of the Centre's model for the long-term sustainability of PPI in research.

  11. Instigating involvement through consumer-based brand equity : an attitudinal study of consumer-based brand equity and consumer involvement

    OpenAIRE

    Bredberg, David; Holmquist, Johan

    2009-01-01

    Recent research on links between dimensions of consumer-based brand equity, as well as links to consumer involvement, has shown that it is a significant predictor of purchase behavior. The purpose of this dissertation is to explore the affect brands have on consumer involvement. We attempt to investigate how consumer-based brand equity affects the level of consumer involvement. Based on consumer behavior theory and previous research of these areas, gathered primary data (an empirical investig...

  12. The emotional involvement in the workplace: An empirical study

    Directory of Open Access Journals (Sweden)

    Ana María Lucia-Casademunt

    2012-06-01

    Full Text Available Purpose: In a multitude of studies, it is verified that the generation of positive attitudes for employees such as job satisfaction or job involvement, have a positive influence on productivity levels of companies. The current investigation focus on the identification of employee-profile -who is emotionally involved with their work activity- through the use of a set of individual, job related and attitudinal factors.Design/methodology: A review of the literature about the main factors that affect the job involvement particularly on its emotional dimension has been completed. For its measurement at the empirical level, various items related to psychological well being of employees included in the IV European Working Conditions Survey-2010 are used. Moreover, those items are identified in Job Involvement Questionnaire (Lodahl & Kejner, 1965. Since then, an empirical and multidimensional study is carried out by applying a logistic regression model on the sample of 11,149 employees obtained with European survey cited previously.Findings: The logistic regression model identifies the factors, which are directly related to emotional involvement at the workplace. Ultimately, is raised a definitive model that define the European employee-profile -who is emotionally involved at the workplace-: a rather aged person who has been working at his/her present place of employment for several years in a medium-sized company where possibly there exist a good working relationship between workers and their superiors –social support-. These employees are “white-collar” workers, have career advancement opportunities in the organizational hierarchy. They perform variety, flexible and complex tasks, which leads to satisfaction in terms of pay and working conditions.Research limitations/implications: Emotional involvement has been measured through self-awareness and, therefore, the corresponding bias in the key variable must be assumed. In addition, the casual

  13. Procedures Involved in Radioecological Studies with Marine Zooplankton

    International Nuclear Information System (INIS)

    Fowler, S.W.; Small, L.F.

    1976-01-01

    Various procedures in marine radio ecological experiments with zooplankton are considered in the light of the possibility of establishing reference methods for marine radiobiological studies. Methods for collection, handling and maintenance prior to and during experiments are suggested for various types of zooplankton. The importance of physiological and physicochemical parameters are discussed in the context of the experimental design with the aim of achieving comparable results among workers involved in this field of research. (author)

  14. International Study of Chaplains' Attitudes About Research.

    Science.gov (United States)

    Snowden, Austyn; Fitchett, George; Grossoehme, Daniel H; Handzo, George; Kelly, Ewan; King, Stephen D W; Telfer, Iain; Tan, Heather; Flannelly, Kevin J

    2017-01-01

    An online survey was conducted by twelve professional chaplain organizations to assess chaplains' attitudes about and involvement in research. A total of 2,092 chaplains from 23 countries responded to the survey. Over 80% thought research was definitely important and nearly 70% thought chaplains should definitely be research literate. Just over 40% said they regularly read research articles and almost 60% said they occasionally did. The respondents rated their own research literacy as 6.5 on a 0-10 scale. Significant positive inter-correlations were found among all four measures: importance of (a) research and (b) research literacy; (c) frequency of reading articles; and (d) research literacy rating. Approximately 35% were never involved, 37% had been involved, 17% were currently involved, and 11% expected to be involved in research. The last three groups were significantly more likely to think research and research literacy were important and to read research articles than chaplains who were never involved in research. Given chaplains' interest in research, actions should be undertaken to facilitate further research engagement.

  15. Comparative Study of Parental Involvement and Private Tuition regarding Educational Attainment of Students

    OpenAIRE

    Malik Amer Atta; Shabnam Razzaq Khan; Shehla Sheikh; Fahmida Akbar

    2014-01-01

    This research work was focused on the “comparative study of parental involvement and private tuition regarding educational attainments of students at secondary school level”. A sample of 80 students of 10th class from ten different secondary schools was taken. To analyze the results t-test was used. In this comparison it was conducted that parental involvement turn out significant effect on student educational attainments as compared to private tuition. On the bases of results researcher has ...

  16. Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making.

    Science.gov (United States)

    Thornton, Hazel; Edwards, Adrian; Elwyn, Glyn

    2003-09-01

    This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision making and risk communication in general practice' incorporated systematic reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomized trial of professional skill development, all informed by consumer and patient engagement. The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers' advisory group and a patients' association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients at these practices. Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. 'Patient involvement' research initiatives that include an equally wide variety of 'user' participants as 'health-professional' participants, accountable to a 'Health in Partnership' funded project, require a user-led viewpoint to be presented and disseminated. This paper presents reflections on the processes of the research, the interpretations of study findings by the involved parties, and notes how this model is fundamental to effective research in the field of patient-centred health care if future practice, policy and research are to change.

  17. Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers

    OpenAIRE

    McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec

    2016-01-01

    Plain English Summary In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical research involve more consumers (patients) and community members (the public) in their research. In 2012, workshop attendees were invited to do an online survey to find out the effect, if any, that attending a workshop had on their awareness of and attitudes to con...

  18. Power to the people: To what extent has public involvement in applied health research achieved this?

    Science.gov (United States)

    Green, Gill

    2016-01-01

    Public involvement is required for applied health research funded in the UK. One of the largest funders, the National Institute of Health Research (NIHR), makes it clear that it values the knowledge of patients and the public. As a result, there are now many resources to make sure that the public voice is included in decision-making about research. However, there is concern that the public voice still has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It looks at how much power and impact patients and members of the public have about research by asking: How do the public contribute to deciding which research areas and which research projects should be funded? How do they influence how the research is carried out? The article argues that there is evidence that the public voice is present in research decision-making. However, there is less evidence of a change in the power dynamic between the scientific research community and the public. The public involved in research are not always equal partners. The scientific research community still has the loudest voice and patients and the public do not always feel sufficiently empowered to challenge it. Public involvement in applied health research is a pre-requisite for funding from many funding bodies. In particular the National Institute of Health Research (NIHR) in the UK, clearly states that it values lay knowledge and there is an expectation that members of the public will participate as research partners in research. As a result a large public involvement infrastructure has emerged to facilitate this. However, there is concern that despite the flurry of activity in promoting public involvement, lay knowledge is marginalised and has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It discusses the meaning of power and

  19. Involving Communities in Deciding What Benefits They Receive in Multinational Research.

    Science.gov (United States)

    Wendler, David; Shah, Seema

    2015-10-01

    There is wide agreement that communities in lower-income countries should benefit when they participate in multinational research. Debate now focuses on how and to what extent these communities should benefit. This debate has identified compelling reasons to reject the claim that whatever benefits a community agrees to accept are necessarily fair. Yet, those who conduct clinical research may conclude from this rejection that there is no reason to involve communities in the process of deciding how they benefit. Against this possibility, the present manuscript argues that involving host communities in this process helps to promote four important goals: (1) protecting host communities, (2) respecting host communities, (3) promoting transparency, and (4) enhancing social value. Published by Oxford University Press on behalf of the Journal of Medicine and Philosophy, Inc. 2015.

  20. Research Education: Perspectives and subjective processes involved in educational research

    Directory of Open Access Journals (Sweden)

    Harm H. Tillema

    2009-10-01

    Full Text Available Educational research acknowledges that researcher’s beliefs and training play a role in framing the outcomes of any study. Research not only consists of defining objectives and following certain methods (search but also of making decisions over the steps taking during the inquiry process (research.Establishing a conceptual framework to guide actions on the subjective processes in research is then crucial to control them. With that purpose in mind we offer researchers and Teacher Educators a heuristic tool to be conscious on the risks that can be taken when immersed in research interpretative process. This instrument could be utilised in PhD programs, masters and research projects.

  1. Human Securitability: A Participatory Action Research Study Involving Novice Teachers and Youngsters

    Science.gov (United States)

    Kravale-Paulina, Marite; Olehnovica, Eridiana

    2015-01-01

    Civic participation, initiative and interest in current events can bridge the alienation felt towards national and municipal institutions, thereby enabling individuals to improve their quality of life and contribute to all-round sustainable development of their resident state. This paper reports on a participatory action research study into civic…

  2. A clash of paradigms? Western and indigenous views on health research involving Aboriginal peoples.

    Science.gov (United States)

    Campbell, Theresa Diane

    2014-07-01

    To explore the issues of data management and data ownership with regard to health research conducted in aboriginal or indigenous populations in Canada. Research with aboriginal communities in Canada has often been conducted by researchers who had little or no understanding of the community in which the research was taking place. This led to 'helicopter' research, which benefitted the researcher but not the community. National aboriginal leadership developed the ownership, control, access, and possession (OCAP) principles, which outline how to manage research data regarding aboriginal people and to counteract disrespectful methodologies. However, these principles present their own set of challenges to those who would conduct research with aboriginal populations. Documents from the Assembly of First Nations, the Government of Canada, Aboriginal writers and researchers, and Nursing theorists and researchers. This is a methodology paper that reviews the issues of data ownership when conducting research with Aboriginal populations. The authors explore indigenous and Western views of knowledge development, outline and discuss the OCAP principles, and present the Canadian Institute of Health Research's guidelines for health research involving aboriginal people as a guide for those who want to carry out ethical and culturally competent research, do no harm and produce research that can benefit aboriginal peoples. There are special considerations associated with conducting research with Aboriginal populations. The Assembly of First Nations wants researchers to use the Ownership, Control, Access and Possession (OCAP) principles with First Nations data. These principles are restrictive and need to be discussed with stakeholders before research is undertaken. In Canada, it is imperative that researchers use the Canadian Institute of Health Research Guidelines for Health Research Involving Aboriginal People to ensure culturally sensitive and ethical conduct during the course of

  3. Research studies with the International Ultraviolet Explorer

    Science.gov (United States)

    1991-01-01

    The IUE research studies comprises 118 separate research programs involving observations, data analysis, and research conducted of the IUE satellite and the NASA Astrophysics Data Program. Herein are presented 92 programs. For each program there is a title, program ID, name of the investigator, statement of work, summary of results, and list of publications.

  4. Decentralized energy studies: compendium of international studies and research

    Energy Technology Data Exchange (ETDEWEB)

    Wallace, C.

    1980-03-01

    The purpose of the compendium is to provide information about research activities in decentralized energy systems to researchers, government officials, and interested citizens. The compendium lists and briefly describes a number of studies in other industrialized nations that involve decentralized energy systems. A contact person is given for each of the activities listed so that interested readers can obtain more information.

  5. Involving students in real-world research: a pilot study for teaching public health and research skills

    Directory of Open Access Journals (Sweden)

    Wilson Nick

    2009-07-01

    Full Text Available Abstract Background There is some evidence that medical students consider population health issues less important than other domains in the health sciences and attitudes to this field may become more negative as training progresses. A need to improve research skills among medical students has also been suggested. Therefore we piloted an integrative teaching exercise that combined teaching of research skills and public health, with real-world research. Methods Third year medical students at the University of Otago (Dunedin, New Zealand filled in a questionnaire on their housing conditions and health. The students were given the results of the survey to discuss in a subsequent class. Student response to this teaching exercise was assessed using a Course Evaluation Questionnaire. Results Of the 210 students in the class, 136 completed the Course Evaluation Questionnaire (65%. A majority of those who responded (77% greatly supported or supported the use of the survey and seminar discussion for future third year classes. Most (70% thought that the session had made them more aware and concerned about societal problems, and 72% felt that they now had an improved understanding of the environmental determinants of health. Students liked the relevance and interaction of the session, but thought it could be improved by the inclusion of small group discussion. The findings of the students' housing and health were considered by the tutors to be of sufficient value to submit to a scientific journal and are now contributing to community action to improve student housing in the city. Conclusion In this pilot study it was feasible to integrate medical student teaching with real-world research. A large majority of the students responded favourably to the teaching exercise and this was generally successful in raising the profile of public health and research. This approach to integrated teaching/research should be considered further in health sciences training and

  6. The Significance of Benefit Perceptions for the Ethics of HIV Research Involving Adolescents in Kenya.

    Science.gov (United States)

    Rennie, Stuart; Groves, Allison K; Hallfors, Denise Dion; Iritani, Bonita J; Odongo, Fredrick S; Luseno, Winnie K

    2017-10-01

    Assessment of benefits is traditionally regarded as crucial to the ethical evaluation of research involving human participants. We conducted focus group discussions (FGDs) with health and other professionals engaged with adolescents, caregivers/parents, and adolescents in Siaya County, Kenya, to solicit opinions about appropriate ways of conducting HIV research with adolescents. Our data revealed that many focus group participants have a profoundly positive conception of participation in health research, including studies conferring seemingly few benefits. In this article, we identify and analyze five different but interrelated types of benefits as perceived by Kenyan adolescent and adult stakeholders in HIV research, and discuss their ethical significance. Our findings suggest that future empirical and conceptual research should concentrate on factors that may trigger researcher obligations to improve benefit perceptions among research participants.

  7. Student Voice in High School: An Action Research Study

    Science.gov (United States)

    Termini, Lorraine

    2013-01-01

    This action research study examined the effects of student voice in one high school and the self-reflection of the researcher-administrator involved in the effort. Using three cycles of action research, the researcher-administrator completed a pilot study, implemented a student voice project in one class, and developed a professional development…

  8. Involving mental health service users in suicide-related research: a qualitative inquiry model.

    Science.gov (United States)

    Lees, David; Procter, Nicholas; Fassett, Denise; Handley, Christine

    2016-03-01

    To describe the research model developed and successfully deployed as part of a multi-method qualitative study investigating suicidal service-users' experiences of mental health nursing care. Quality mental health care is essential to limiting the occurrence and burden of suicide, however there is a lack of relevant research informing practice in this context. Research utilising first-person accounts of suicidality is of particular importance to expanding the existing evidence base. However, conducting ethical research to support this imperative is challenging. The model discussed here illustrates specific and more generally applicable principles for qualitative research regarding sensitive topics and involving potentially vulnerable service-users. Researching into mental health service users with first-person experience of suicidality requires stakeholder and institutional support, researcher competency, and participant recruitment, consent, confidentiality, support and protection. Research with service users into their experiences of sensitive issues such as suicidality can result in rich and valuable data, and may also provide positive experiences of collaboration and inclusivity. If challenges are not met, objectification and marginalisation of service-users may be reinforced, and limitations in the evidence base and service provision may be perpetuated.

  9. Public and patient involvement in quantitative health research: A statistical perspective.

    Science.gov (United States)

    Hannigan, Ailish

    2018-06-19

    The majority of studies included in recent reviews of impact for public and patient involvement (PPI) in health research had a qualitative design. PPI in solely quantitative designs is underexplored, particularly its impact on statistical analysis. Statisticians in practice have a long history of working in both consultative (indirect) and collaborative (direct) roles in health research, yet their perspective on PPI in quantitative health research has never been explicitly examined. To explore the potential and challenges of PPI from a statistical perspective at distinct stages of quantitative research, that is sampling, measurement and statistical analysis, distinguishing between indirect and direct PPI. Statistical analysis is underpinned by having a representative sample, and a collaborative or direct approach to PPI may help achieve that by supporting access to and increasing participation of under-represented groups in the population. Acknowledging and valuing the role of lay knowledge of the context in statistical analysis and in deciding what variables to measure may support collective learning and advance scientific understanding, as evidenced by the use of participatory modelling in other disciplines. A recurring issue for quantitative researchers, which reflects quantitative sampling methods, is the selection and required number of PPI contributors, and this requires further methodological development. Direct approaches to PPI in quantitative health research may potentially increase its impact, but the facilitation and partnership skills required may require further training for all stakeholders, including statisticians. © 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.

  10. Involving People with Lived Experience of Homelessness in Electronic Health Records Research

    Directory of Open Access Journals (Sweden)

    Serena Luchenski

    2017-04-01

    Using a participatory and dynamic approach to involve people with lived experience of homelessness and exclusion is an effective public engagement methodology for complex topics such as EHR research and data linkage. Information provided in the workshop was useful for interpreting findings, identifying strengths and gaps in health and social services, and developing research and practice recommendations.

  11. Clinical research data sharing: what an open science world means for researchers involved in evidence synthesis.

    Science.gov (United States)

    Ross, Joseph S

    2016-09-20

    The International Committee of Medical Journal Editors (ICMJE) recently announced a bold step forward to require data generated by interventional clinical trials that are published in its member journals to be responsibly shared with external investigators. The movement toward a clinical research culture that supports data sharing has important implications for the design, conduct, and reporting of systematic reviews and meta-analyses. While data sharing is likely to enhance the science of evidence synthesis, facilitating the identification and inclusion of all relevant research, it will also pose key challenges, such as requiring broader search strategies and more thorough scrutiny of identified research. Furthermore, the adoption of data sharing initiatives by the clinical research community should challenge the community of researchers involved in evidence synthesis to follow suit, including the widespread adoption of systematic review registration, results reporting, and data sharing, to promote transparency and enhance the integrity of the research process.

  12. Correction of refractive errors in rhesus macaques (Macaca mulatta) involved in visual research.

    Science.gov (United States)

    Mitchell, Jude F; Boisvert, Chantal J; Reuter, Jon D; Reynolds, John H; Leblanc, Mathias

    2014-08-01

    Macaques are the most common animal model for studies in vision research, and due to their high value as research subjects, often continue to participate in studies well into old age. As is true in humans, visual acuity in macaques is susceptible to refractive errors. Here we report a case study in which an aged macaque demonstrated clear impairment in visual acuity according to performance on a demanding behavioral task. Refraction demonstrated bilateral myopia that significantly affected behavioral and visual tasks. Using corrective lenses, we were able to restore visual acuity. After correction of myopia, the macaque's performance on behavioral tasks was comparable to that of a healthy control. We screened 20 other male macaques to assess the incidence of refractive errors and ocular pathologies in a larger population. Hyperopia was the most frequent ametropia but was mild in all cases. A second macaque had mild myopia and astigmatism in one eye. There were no other pathologies observed on ocular examination. We developed a simple behavioral task that visual research laboratories could use to test visual acuity in macaques. The test was reliable and easily learned by the animals in 1 d. This case study stresses the importance of screening macaques involved in visual science for refractive errors and ocular pathologies to ensure the quality of research; we also provide simple methodology for screening visual acuity in these animals.

  13. People involved in radiation research and protection - an historical perspective

    International Nuclear Information System (INIS)

    Toussaint, L.F.

    2010-01-01

    Full text: The lives of selected people involved in radiation research are covered in two parts: 1. history of radiation and radioactivity; and 2. historical aspects of radiation and radiation protection in Western Australia. History of radiation/radioactivity: The background of some of the key people involved in early radiation research is discussed. These include Rontgen and Becqucrel who undertook early research into X-rays and radioactivity respectively. As well as the radiation hazards which early radiation scientists faced, there were also social pressures, as exemplified by the life of women such as Marie Curie, particularly after the death of her husband Pierre. Despite this being the time of the so-called 'beautiful years' in Europe, where there was a friendly exchange of ideas between scientists from various countries, there were also protracted disagreements. Some of the scientific findings of the Curies' daughter (Irene Joliot-Curie) and husband (Frederic Joliot-Curie) were vigorously disputed by Lisa Meitner (and colleague Otto Hahn) in Vienna. The 'beautiful years' came to an end when politics intruded and scientists such as Lisa Meitner had to flee from persecution. The splitting of the atom and realisation (by Leo Szilard) that a chain reaction was possible, led to political barriers being erected around scientists. With Europe poised for war, the implication of this science for warfare application was cause for concern among many of the normally free thinking and co-operative scientists. Secrecy now prevailed.

  14. Field Research Studying Whales in an Undergraduate Animal Behavior Laboratory

    Science.gov (United States)

    MacLaren, R. David; Schulte, Dianna; Kennedy, Jen

    2012-01-01

    This work describes a new field research laboratory in an undergraduate animal behavior course involving the study of whale behavior, ecology and conservation in partnership with a non-profit research organization--the Blue Ocean Society for Marine Conservation (BOS). The project involves two weeks of training and five weekend trips on whale watch…

  15. The effects of parental involvement on children's education: A study in elementary schools in Indonesia

    NARCIS (Netherlands)

    Yulianti, K.; Denessen, E.J.P.G.; Droop, W.

    2018-01-01

    The Indonesian government through the Ministry of Education has begun to emphasize the importance of parental involvement and community participation in children's education. However, there is a lack of research on parental involvement in Indonesia. The aim of the study is to provide insights into

  16. Increasing User Involvement in Health Care and Health Research Simultaneously

    DEFF Research Database (Denmark)

    Kaltoft, Mette Kjer; Nielsen, Jesper Bo; Salkeld, Glenn

    2014-01-01

    of the effects of different actions and interventions on their health, including those implying contact with health care services. We see their research as primarily carried out in order to make better decisions for themselves, but they can offer to contribute the results to the wider population. We see...... at the point of decision need, when motivation is highest. Some basic distinctions, such as those between science and non-science, research and practice, community and individual, and lay and professional become somewhat blurred and may need to be rethought in light of this approach....... to increased user involvement, though somewhat more aligned with the former. METHODS: Our online decision support tools, delivered directly to the person in the community and openly accessible, are to be seen as research resources. They will take the form of interactive decision aids for a variety of specific...

  17. Medical staff involvement in nursing homes: development of a conceptual model and research agenda.

    Science.gov (United States)

    Shield, Renée; Rosenthal, Marsha; Wetle, Terrie; Tyler, Denise; Clark, Melissa; Intrator, Orna

    2014-02-01

    Medical staff (physicians, nurse practitioners, physicians' assistants) involvement in nursing homes (NH) is limited by professional guidelines, government policies, regulations, and reimbursements, creating bureaucratic burden. The conceptual NH Medical Staff Involvement Model, based on our mixed-methods research, applies the Donabedian "structure-process-outcomes" framework to the NH, identifying measures for a coordinated research agenda. Quantitative surveys and qualitative interviews conducted with medical directors, administrators and directors of nursing, other experts, residents and family members and Minimum Data Set, the Online Certification and Reporting System and Medicare Part B claims data related to NH structure, process, and outcomes were analyzed. NH control of medical staff, or structure, affects medical staff involvement in care processes and is associated with better outcomes (e.g., symptom management, appropriate transitions, satisfaction). The model identifies measures clarifying the impact of NH medical staff involvement on care processes and resident outcomes and has strong potential to inform regulatory policies.

  18. Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making.

    NARCIS (Netherlands)

    Thornton, H.; Edwards, A.; Elwyn, G.

    2003-01-01

    OBJECTIVE: This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision

  19. Institutional Oversight of Occupational Health and Safety for Research Programs Involving Biohazards.

    Science.gov (United States)

    Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A

    2017-06-01

    Research with hazardous biologic materials (biohazards) is essential to the progress of medicine and science. The field of microbiology has rapidly advanced over the years, partially due to the development of new scientific methods such as recombinant DNA technology, synthetic biology, viral vectors, and the use of genetically modified animals. This research poses a potential risk to personnel as well as the public and the environment. Institutions must have appropriate oversight and take appropriate steps to mitigate the risks of working with these biologic hazards. This article will review responsibilities for institutional oversight of occupational health and safety for research involving biologic hazards.

  20. Parental decision making involvement and decisional conflict: a descriptive study.

    Science.gov (United States)

    Boland, Laura; Kryworuchko, Jennifer; Saarimaki, Anton; Lawson, Margaret L

    2017-06-13

    Decisional conflict is a state of uncertainty about the best treatment option among competing alternatives and is common among adult patients who are inadequately involved in the health decision making process. In pediatrics, research shows that many parents are insufficiently involved in decisions about their child's health. However, little is known about parents' experience of decisional conflict. We explored parents' perceived decision making involvement and its association with parents' decisional conflict. We conducted a descriptive survey study in a pediatric tertiary care hospital. Our survey was guided by validated decisional conflict screening items (i.e., the SURE test). We administered the survey to eligible parents after an ambulatory care or emergency department consultation for their child. Four hundred twenty-nine respondents were included in the analysis. Forty-eight percent of parents reported not being offered treatment options and 23% screened positive for decisional conflict. Parents who reported being offered options experienced less decisional conflict than parents who reported not being offered options (5% vs. 42%, p conflict after their clinical consultation. Involving parents in the decision making process might reduce their risk of decisional conflict. Evidence based interventions that support parent decision making involvement, such as shared decision making, should be evaluated and implemented in pediatrics as a strategy to reduce parents' decisional conflict.

  1. Researching Reflexively With Patients and Families: Two Studies Using Video-Reflexive Ethnography to Collaborate With Patients and Families in Patient Safety Research.

    Science.gov (United States)

    Collier, Aileen; Wyer, Mary

    2016-06-01

    Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods. © The Author(s) 2015.

  2. Attitudes, understanding, and concerns regarding medical research amongst Egyptians: A qualitative pilot study

    Directory of Open Access Journals (Sweden)

    Raafat May

    2007-08-01

    Full Text Available Abstract Background Medical research must involve the participation of human subjects. Knowledge of patients' perspectives and concerns with their involvement in research would enhance recruitment efforts, improve the informed consent process, and enhance the overall trust between patients and investigators. Several studies have examined the views of patients from Western countries. There is limited empirical research involving the perspectives of individuals from developing countries. The purpose of this study is to examine the attitudes of Egyptian individuals toward medical research. Such information would help clarify the type and extent of concerns regarding research participation of individuals from cultural, economic, and political backgrounds that differ from those in developed countries. Methods We conducted semi-structured interviews with 15 Egyptian individuals recruited from the outpatient settings (public and private at Ain Shams University in Cairo, Egypt. Interviews were taped, transcribed, and translated. Thematic analysis followed. Results All individuals valued the importance of medical research; however most would not participate in research that involved more than minimal risk. Individuals were comfortable with studies involving surveys and blood sampling, but many viewed drug trials as being too risky. All participants valued the concept of informed consent, as they thought that their permission to be in a research study was paramount. Many participants had discomfort with or difficulty in the understanding several research concepts: randomization, double-blind, and clinical equipoise. Trust in the physicians performing research was important in deciding to participate in clinical research. The small sample size and the selection bias associated with obtaining information from only those who agreed to participate in a research study represent limitations in this study. Conclusion Overall, individuals in our sample recognize

  3. Patient engagement with research: European population register study.

    Science.gov (United States)

    McKevitt, Christopher; Fudge, Nina; Crichton, Siobhan; Bejot, Yannick; Daubail, Benoît; Di Carlo, Antonio; Fearon, Patricia; Kolominsky-Rabas, Peter; Sheldenkar, Anita; Newbound, Sophie; Wolfe, Charles D A

    2015-12-01

    Lay involvement in implementation of research evidence into practice may include using research findings to guide individual care, as well as involvement in research processes and policy development. Little is known about the conditions required for such involvement. To assess stroke survivors' research awareness, use of research evidence in their own care and readiness to be involved in research processes. Cross sectional survey of stroke survivors participating in population-based stroke registers in six European centres. The response rate was 74% (481/647). Reasons for participation in register research included responding to clinician request (56%) and to 'give something back' (19%); however, 20% were unaware that they were participating in a stroke register. Research awareness was generally low: 57% did not know the purpose of the register they had been recruited to; 73% reported not having received results from the register they took part in; 60% did not know about any research on stroke care. Few participants (7.6%) used research evidence during their consultations with a doctor. The 34% of participants who were interested in being involved in research were younger, more highly educated and already research aware. Across Europe, stroke survivors already participating in research appear ill informed about stroke research. Researchers, healthcare professionals and patient associations need to improve how research results are communicated to patient populations and research participants, and to raise awareness of the relationship between research evidence and increased quality of care. © 2014 John Wiley & Sons Ltd.

  4. Librarian involvement in a nutrition undergraduate research course: preparing nutrition students for evidence-based practice.

    Science.gov (United States)

    Smith, Susan C; Penumetcha, Meera

    2010-01-01

    Given the foundational importance of literature searching skills to later stages of research and, ultimately, evidence-based practice, the authors wanted to assess a unique strategy for teaching such skills. This pilot study describes the results of an undergraduate nutrition research course in which a librarian lead several class sessions. The goal of this study was to assess students' perceptions, attitudes and use of research literature and resources before and after a course partially taught by a librarian. Twenty-seven students enrolled in an undergraduate Introduction to Research course at Georgia State University were given pre- and post-test questionnaires at the beginning and end of a course that included three librarian-led class sessions. Most of the results indicate that the repeated involvement of a librarian enriched this particular undergraduate research course. By the end of the course, students were more comfortable in libraries and with using library resources; they used the campus library more frequently; they were more confident in their ability to find high-quality information on nutrition-related topics and identify strengths and weaknesses of different information sources; and they felt they gained skills that will help them achieve their educational and career goals.

  5. Methodological issues involved in conducting qualitative research on support for nurses directly involved with women who chose to terminate their pregnancy

    Directory of Open Access Journals (Sweden)

    Antoinette Gmeiner

    2001-11-01

    Full Text Available The purpose of this article is to describe the methodological issues involved in conducting qualitative research to explore and describe nurses’ experience of being directly involved with termination of pregnancies and developing guidelines for support for these nurses. Opsomming Die doel van hierdie artikel is om die metodologiese vraagstukke te beskryf rondom die uitvoer van kwalitatiewe navorsing waar verpleegkundiges se ervaring van hul direkte betrokkenheid by terminasie van swangerskap verken en beskryf is. *Please note: This is a reduced version of the abstract. Please refer to PDF for full text.

  6. Various aspects of lyoluminescence studies in radiation research

    International Nuclear Information System (INIS)

    Kundu, H.K.

    1992-01-01

    Lyoluminescence is the emission of light during the dissolution of irradiated organic and inorganic solids in suitable solvents. This phenomenon has attracted interdisciplinary research involving radiation physics, radiation chemistry and physical chemistry. This paper presents an overall view of the various aspects of lyoluminescence studies in the field of radiation research. (author). 14 refs

  7. Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes

    Directory of Open Access Journals (Sweden)

    Goodman Claire

    2011-11-01

    Full Text Available Abstract Background Public involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg to a study on living and dying in care homes. Methods A longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents. Results There were three areas where the involvement of the Public Involvement in Research group (PIRg positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group. Conclusions

  8. Musings on privacy issues in health research involving disaggregate geographic data about individuals.

    Science.gov (United States)

    Boulos, Maged N Kamel; Curtis, Andrew J; Abdelmalik, Philip

    2009-07-20

    This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic) of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association) workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals), including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.

  9. Introducing CARL - Studying Stakeholder Involvement in Decision-Making on RWM

    International Nuclear Information System (INIS)

    Bergmans, Anne

    2006-01-01

    This paper provides some background on the four following papers, drawing on the research conducted within the CARL research project. CARL is a cross-national 'social sciences research project into the effects of stakeholder involvement on decision-making in radioactive waste management'. The paper introduces the project, its aims, activities and describes the common framework used to look at each individual country

  10. Promoting the inclusion of Afghan women and men in research: reflections from research and community partners involved in implementing a 'proof of concept' project.

    Science.gov (United States)

    Riggs, Elisha; Yelland, Jane; Szwarc, Josef; Casey, Sue; Chesters, Donna; Duell-Piening, Philippa; Wahidi, Sayed; Fouladi, Fatema; Brown, Stephanie

    2015-01-31

    With mounting evidence that poor maternal and child health outcomes are related to the social determinants of health, researchers need to engage with vulnerable and isolated communities to gather the evidence that is essential to determine appropriate solutions. Conventional research methods may not ensure the degree and quality of participation that is necessary for meaningful study findings. Participatory methods provide reciprocal opportunities for often excluded communities to both take part in, and guide the conduct of research. The Having a baby in a new country research project was undertaken to provide evidence about how women and men of refugee background experience health services at the time of having a baby. This two year, multifaceted proof of concept study comprised: 1) an organisational partnership to oversee the project; 2) a community engagement framework including: female and male Afghan community researchers, community and sector stakeholder advisory groups and community consultation and engagement. Inclusive research strategies that address power imbalances in research, and diversity of and within communities, are necessary to obtain the evidence required to address health inequalities in vulnerable populations. Such an approach involves mindfully adapting research processes to ensure that studies have regard for the advice of community members about the issues that affect them. Researchers have much to gain by committing time and resources to engaging communities in reciprocal ways in research processes.

  11. 75 FR 62738 - Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides...

    Science.gov (United States)

    2010-10-13

    ... addressed in EPA science and ethics reviews of proposed and completed human research for pesticides, based... Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides; Notification to... protection of human subjects of research that apply to third parties who conduct or support research for...

  12. What women want from women's reproductive health research: a qualitative study.

    Science.gov (United States)

    Pandey, Shilpi; Porter, Maureen; Bhattacharya, Siladitya

    2015-12-01

    Researchers are being urged to involve patients in the design and conduct of studies in health care with limited insight at present into their needs, abilities or interests. This is particularly true in the field of reproductive health care where many conditions such as pregnancy, menopause and fertility problems involve women who are otherwise healthy. To ascertain the feasibility of involving patients and members of the public in research on women's reproductive health care (WRH). University and tertiary care hospital in north-east Scotland; 37 women aged 18-57. Four focus groups and one individual interview were audio-recorded and verbatim transcripts analysed thematically by two researchers using a grounded theory approach. Most participants were interested in WRH, but some participated to promote a health issue of special concern to them. Priorities for research reflected women's personal concerns: endometriosis, polycystic ovary syndrome, menopause, fertility risks of delaying parenthood and early post-natal discharge from hospital. Women were initially enthusiastic about getting involved in research on WRH at the design or delivery stage, but after discussion in focus groups, some questioned their ability to do so or the time available to commit to research. None of the respondents expected payment for any involvement, believing that the experience would be rewarding enough in itself. Involving patients and public in research would include different perspectives and priorities; however, recruiting for this purpose would be challenging. © 2014 John Wiley & Sons Ltd.

  13. User Involvement in In-house Developed Software : Case Study of a Nigerian Financial Institution

    OpenAIRE

    Owoseni, Adebowale; Imhanyehor, Germaine

    2011-01-01

    Over the years, researchers have argued that user friendly and result oriented systems were not necessarily products of participatory user involvement; however there is a degree of user involvement required in the development process of any Information System. The aim of this research is to discover the level of user involvement in in-house software development process in All Nigerian Bank (ANB). We use two research methods - survey and process observation. A survey was conducted for 107 end ...

  14. Perceptions of physiotherapists towards research: a mixed methods study.

    Science.gov (United States)

    Janssen, J; Hale, L; Mirfin-Veitch, B; Harland, T

    2016-06-01

    To explore the perceptions of physiotherapists towards the use of and participation in research. Concurrent mixed methods research, combining in-depth interviews with three questionnaires (demographics, Edmonton Research Orientation Survey, visual analogue scales for confidence and motivation to participate in research). One physiotherapy department in a rehabilitation hospital, consisting of seven specialised areas. Twenty-five subjects {four men and 21 women, mean age 38 [standard deviation (SD) 11] years} who had been registered as a physiotherapist for a mean period of 15 (SD 10) years participated in this study. They were registered with the New Zealand Board of Physiotherapy, held a current practising certificate, and were working as a physiotherapist or physiotherapy/allied health manager at the hospital. The primary outcome measure was in-depth interviews and the secondary outcome measures were the three questionnaires. Physiotherapists were generally positive towards research, but struggled with the concept of research, the available literature and the time to commit to research. Individual confidence and orientation towards research seemed to influence how these barriers were perceived. This study showed that physiotherapists struggle to implement research in their daily practice and become involved in research. Changing physiotherapists' conceptions of research, making it more accessible and providing dedicated research time could facilitate increased involvement in the physiotherapy profession. Copyright © 2015 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.

  15. Disagreement in Parental Reports of Father Involvement

    Science.gov (United States)

    Charles, Pajarita; Spielfogel, Jill; Gorman-Smith, Deborah; Schoeny, Michael; Henry, David; Tolan, Patrick

    2016-01-01

    Despite agreement on the value of father involvement in children’s lives, research has been limited due to the exclusion of fathers in studies, questionable validity of mothers’ reports on father involvement, and simple measures of fathering behavior. Our study extends previous research by comparing reports of father involvement using robust, multidimensional father involvement measures. Data from 113 fathers and 126 mothers reporting on 221 children were used to assess father involvement. Results indicate that fathers reported significantly higher levels of involvement than mothers reported. Findings from hierarchical linear models suggest that race/ethnicity and mothers’ reports of positive relationship quality were associated with smaller discrepancies in reports of father involvement, whereas nonmarried partnerships, older children, father residence, and biological status predicted larger discrepancies. Our study demonstrates the importance of obtaining father involvement reports directly from fathers and why father involvement should be assessed as a multidimensional construct to examine fathering behavior. PMID:29515272

  16. Musings on privacy issues in health research involving disaggregate geographic data about individuals

    Directory of Open Access Journals (Sweden)

    AbdelMalik Philip

    2009-07-01

    Full Text Available Abstract This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals, including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.

  17. A comparative study of contemporary user involvement within healthcare systems across England, Poland and Slovenia.

    Science.gov (United States)

    Lichon, Mateusz; Kavcic, Matic; Masterson, Daniel

    2015-01-01

    The purpose of this paper is to explore how healthcare-users' engagement is perceived, how it occurs and how these perceptions differ between three European countries: England, Poland and Slovenia, using the concepts of voice, choice and coproduction. This comparative, qualitative study is based on a review of legal documents, academic literature and semi-structured interviews conducted in October and November 2011. A research sample consisted of 21 interviewees representing various stakeholders including healthcare-users, doctors and managers. Primary and secondary data were analysed using theoretical thematic analysis. Emerging themes were identified from the interviews and related to the indicators describing healthcare-users' involvement in the voice, choice and coproduction model. Results of the comparative qualitative research suggest that the healthcare-users' influence is strongly grounded in England where the healthcare system and professionals are prepared to include healthcare-users in the decision-making process. In Slovenia, cultural development of healthcare-users' involvement seems to proceed the institutional development. In Poland, institutions are ready to involve healthcare-users in decision-making process although the cultural desirability of involving users among doctors and patients is lacking. The notion of user involvement is increasingly gaining importance and research attention, yet there is still little known about the way cultural, political, historical differences between various European countries influence it. This paper explores this little known area using the original approach of user involvement (Dent et al., 2011) with input from various stakeholders including patients, healthcare representatives and academics.

  18. Learning to work together - lessons from a reflective analysis of a research project on public involvement.

    Science.gov (United States)

    Howe, A; Mathie, E; Munday, D; Cowe, M; Goodman, C; Keenan, J; Kendall, S; Poland, F; Staniszewska, S; Wilson, P

    2017-01-01

    Patient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an important research question. This article analyses the experience of a research team using PPI, and makes recommendations on strengthening PPI in research. There were different PPI roles in our study - some people were part of the research team: some were on the advisory group; and there were patient groups who gave specific feedback on how to make research work better for their needs. We used minutes, other written documents, and structured individual and group reflections to learn from our own experiences over time. The main findings were:- for researchers and those in a PPI role to work in partnership, project structures must allow flexibility and responsiveness to different people's ideas and needs; a named link person can ensure support; PPI representatives need to feel fully included in the research; make clear what is expected for all roles; and ensure enough time and funding to allow meaningful involvement. Some roles brought more demands but also more rewards than others - highlighting that it is important that people giving up their time to help with research experience gains from doing so. Those contributing to PPI on a regular basis may want to learn new skills, rather than always doing the same things. Researchers and the public need to find ways to develop roles in PPI over time. We also found that, even for a team with expertise in PPI, there was a need both for understanding of different ways to contribute, and an evolving 'normalisation' of new ways of working together over time, which both enriched the process and the outputs. Background Patient and public involvement (PPI) is now an expectation of research funders, in the UK, but there is relatively little published literature on what this means in practice - nor is there much evaluative research

  19. Involving Members of the Public in Health Economics Research: Insights from Selecting Health States for Valuation to Estimate Quality-Adjusted Life-Year (QALY) Weights.

    Science.gov (United States)

    Goodwin, Elizabeth; Boddy, Kate; Tatnell, Lynn; Hawton, Annie

    2018-04-01

    Over recent years, public involvement in health research has expanded considerably. However, public involvement in designing and conducting health economics research is seldom reported. Here we describe the development, delivery and assessment of an approach for involving people in a clearly defined piece of health economics research: selecting health states for valuation in estimating quality-adjusted life-years (QALYs). This involvement formed part of a study to develop a condition-specific preference-based measure of health-related quality of life, the Multiple Sclerosis Impact Scale (MSIS-8D), and the work reported here relates to the identification of plausible, or realistic, health states for valuation. An Expert Panel of three people with multiple sclerosis (MS) was recruited from a local involvement network, and two health economists designed an interactive task that enabled the Panel to identify health states that were implausible, or unlikely to be experienced. Following some initial confusion over terminology, which was resolved by discussion with the Panel, the task worked well and can be adapted to select health states for valuation in the development of any preference-based measure. As part of the involvement process, five themes were identified by the Panel members and the researchers which summarised our experiences of public involvement in this health economics research example: proportionality, task design, prior involvement, protectiveness and partnerships. These are described in the paper, along with their practical implications for involving members of the public in health economics research. Our experience demonstrates how members of the public and health economists can work together to improve the validity of health economics research. Plain Language Summary It has become commonplace to involve members of the public in health service research. However, published reports of involving people in designing health economics research are rare. We

  20. Involvement of External Stakeholders in Local Health Policymaking Process: A Case Study from Odense Municipality, Denmark

    Science.gov (United States)

    Karlsson, Leena Eklund; Jakobsen, Mette Winge; Winblad, Malin; Aro, Arja R.

    2017-01-01

    Collaboration between research and policy is an essential element for knowledge-based public health. However, only half of the Danish municipalities have experience with collaborating with researchers or other stakeholders. Through content analysis of interviews and policy documents the study explores the involvement of external stakeholders in…

  1. Tea, talk and technology: patient and public involvement to improve connected health 'wearables' research in dementia.

    Science.gov (United States)

    Hassan, Lamiece; Swarbrick, Caroline; Sanders, Caroline; Parker, Angela; Machin, Matt; Tully, Mary P; Ainsworth, John

    2017-01-01

    There are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research. Background Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool

  2. 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

  3. Undergraduate Student Involvement in International Research - The IRES Program at MAX-lab, Sweden

    Science.gov (United States)

    Briscoe, William; O'Rielly, Grant; Fissum, Kevin

    2014-03-01

    Undergraduate students associated with The George Washington University and UMass Dartmouth have had the opportunity to participate in nuclear physics research as a part of the PIONS@MAXLAB Collaboration performing experiments at MAX-lab at Lund University in Sweden. This project has supported thirteen undergraduate students during 2009 - 2011. The student researchers are involved with all aspects of the experiments performed at the laboratory, from set-up to analysis and presentation at national conferences. These experiments investigate the dynamics responsible for the internal structure of the nucleon through the study of pion photoproduction off the nucleon and high-energy Compton scattering. Along with the US and Swedish project leaders, members of the collaboration (from four different countries) have contributed to the training and mentoring of these students. This program provides students with international research experiences that prepare them to operate successfully in a global environment and encourages them to stay in areas of science, technology, engineering and math (STEM) that are crucial for our modern, technology-dependent society. We will present the history, goals and outcomes in both physics results and student success that have come from this program. This work supported by NSF OISE/IRES award 0553467.

  4. Using the critical incident technique in community-based participatory research: a case study.

    Science.gov (United States)

    Belkora, Jeffrey; Stupar, Lauren; O'Donnell, Sara

    2011-01-01

    Successful community-based participatory research involves the community partner in every step of the research process. The primary study for this paper took place in rural, Northern California. Collaborative partners included an academic researcher and two community based resource centers that provide supportive services to people diagnosed with cancer. This paper describes our use of the Critical Incident Technique (CIT) to conduct Community-based Participatory Research. We ask: Did the CIT facilitate or impede the active engagement of the community in all steps of the study process? We identified factors about the Critical Incident Technique that were either barriers or facilitators to involving the community partner in every step of the research process. Facilitators included the CIT's ability to accommodate involvement from a large spectrum of the community, its flexible design, and its personal approach. Barriers to community engagement included training required to conduct interviews, depth of interview probes, and time required. Overall, our academic-community partners felt that our use of the CIT facilitated community involvement in our Community-Based Participatory Research Project, where we used it to formally document the forces promoting and inhibiting successful achievement of community aims.

  5. The Greater Involvement of People Living with AIDS principle: theory versus practice in Ontario's HIV/AIDS community-based research sector.

    Science.gov (United States)

    Travers, R; Wilson, M G; Flicker, S; Guta, A; Bereket, T; McKay, C; van der Meulen, A; Cleverly, S; Dickie, M; Globerman, J; Rourke, S B

    2008-07-01

    Drawing on the Greater Involvement of People with HIV/AIDS (GIPA) principle, the HIV/AIDS movement began to "democratize" research in Canada in the mid-1990s. To date, there is little evidence about the success of the community-based research (CBR) movement in relation to the implementation of GIPA. We draw on findings from a larger study examining barriers and facilitating factors in relation to HIV-related CBR in Ontario, Canada. An online survey was completed by 39 senior managers in Ontario AIDS service organizations (ASOs). Twenty-five in-depth, semi-structured interviews were then conducted to further explore the survey findings. Survey respondents reported that, compared to researchers and frontline service providers, people living with HIV/AIDS (PLWHA) tended to be the least involved in all stages (input, process and outcome) of CBR projects. AIDS service organizations with a mandate that included serving rural and urban communities reported even lower levels of PLWHA involvement in CBR. Qualitative data reveal complex barriers that make meaningful PLWHA engagement in CBR difficult, including: HIV-related stigma; health-related challenges; "credentialism"; lack of capacity to engage in research; other issues taking priority; and mistrust of researchers. Facilitating factors included valuing lived experience; training and mentoring opportunities; financial compensation; trust building; and accommodating PLWHA's needs. While there is strong support for the GIPA principles in theory, practice lags far behind.

  6. Predictors of justice system involvement: Maltreatment and education.

    Science.gov (United States)

    Robertson, Angela A; Walker, Courtney S

    2018-02-01

    Decades of research have established that experience of abuse and/or neglect in childhood is related to negative outcomes, such as juvenile delinquency. Existing research has shown that involvement in child welfare services is also related to juvenile delinquency, particularly for children who are victims of neglect. Research has also identified educational factors such as chronic absenteeism as significant predictors of involvement in the juvenile justice system. However, little research has investigated the combined influence of educational factors, child abuse, and involvement in child protective services on justice system involvement. The current study examined the influence of educational factors and involvement in child protective services on justice system involvement. The study utilized records from an educational database of children who attended a school within a county of Mississippi in any year from 2003 through 2013. Cases were then matched with records from the county Youth Court, Law Enforcement agencies, and Child Protection Services. A multivariate logistic regression controlling for gender, race, current age, and time at risk was conducted to involvement in the justice system. In general, educational factors were stronger predictors of justice system involvement than allegations of maltreatment. Copyright © 2017 Elsevier Ltd. All rights reserved.

  7. Ethical issues in Alzheimer's disease research involving human subjects.

    Science.gov (United States)

    Davis, Dena S

    2017-12-01

    As we aggressively pursue research to cure and prevent Alzheimer's disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are (1) the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects' death; (2) the creation of cohorts of 'study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; (3) reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; (4) the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants' welfare if the information is obtained by insurance companies or long-term care providers; (5) the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  8. Parental Involvement and Academic Achievement

    Science.gov (United States)

    Goodwin, Sarah Christine

    2015-01-01

    This research study examined the correlation between student achievement and parent's perceptions of their involvement in their child's schooling. Parent participants completed the Parent Involvement Project Parent Questionnaire. Results slightly indicated parents of students with higher level of achievement perceived less demand or invitations…

  9. 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.

  10. Involvement and emancipation of the worker. Action research in a university hospital.

    Science.gov (United States)

    Bolis, Ivan; Brunoro, Claudio; Sznelwar, Laerte Idal

    2012-01-01

    The present action research article is linked to an ergonomics project in a university hospital. The author's proposal is to focus action on the effective worker involvement required for the creation of spaces/mechanisms within organizations where people can enhance cooperation and deliberation on matters relating to work. For this purpose, a committee was introduced to assist in finding problems and solutions directly in work situations, so that workers could experience relative autonomy allowing them to develop procedures and choose tools appropriate to their own real needs. Based on this organizational implementation and on subsequent interviews, the practical results are analyzed and related to employee involvement. One can conclude that workers in all areas of the organization can be active elements for improving working conditions and productivity in companies.

  11. Strategies to enhance patient recruitment and retention in research involving patients with a first episode of mental illness.

    Science.gov (United States)

    Furimsky, Ivana; Cheung, Amy H; Dewa, Carolyn S; Zipursky, Robert B

    2008-11-01

    Recruitment and retention of research participants is often the most labor-intensive and difficult component of clinical trials. Poor recruitment and retention frequently pose as a major barrier in the successful completion of clinical trials. In fact, many studies are prematurely terminated, or their findings questioned due to low recruitment and retention rates. The conduct of clinical trials involving youth with a first episode of mental illness comes with additional challenges in recruitment and retention including barriers associated with engagement and family involvement. To develop effective early interventions for first episode mental illness, it is necessary to develop strategies to enhance recruitment and retention in this patient population. This article presents the recruitment and retention challenges experienced in two clinical trials: one involving participants experiencing a first episode of depression and one involving participants experiencing a first episode psychosis. Challenges with recruitment and retention are identified and reviewed at both the patient level and clinician level. Strategies that were implemented to enhance recruitment and retention in these two studies are also discussed. Finally, ethical issues to consider when implementing these strategies are also highlighted.

  12. Research involving subjects with Alzheimer's disease in Italy: the possible role of family members.

    Science.gov (United States)

    Porteri, Corinna; Petrini, Carlo

    2015-03-04

    Alzheimer's disease is a very common, progressive and still incurable disease. Future possibilities for its cure lie in the promotion of research that will increase our knowledge of the disorder's causes and lead to the discovery of effective remedies. Such research will necessarily involve individuals suffering from Alzheimer's disease. This raises the controversial issue of whether patients with Alzheimer's disease are competent to give their consent for research participation. We discuss the case of subjects with Alzheimer's disease who may have impaired decision-making capacity and who could be involved in research protocols, taking into consideration aspects of the Italian normative framework, which requires a court-appointed legal representative for patients who are not able to give consent and does not recognise the legal value of advance directives. We show that this normative framework risks preventing individuals with Alzheimer's disease from taking part in research and that a new policy that favours research while promoting respect for patients' well-being and rights needs to be implemented. We believe that concerns about the difficulty of obtaining fully valid consent of patients with Alzheimer's disease should not prevent them from participating in clinical trials and benefiting from scientific progress. Therefore, we argue that the requirement for patients to have a legal representative may not be the best solution in all countries and clinical situations, and suggest promoting the role of patients' family members in the decision-making process. In addition, we outline the possible role of advance directives and ethics committees.

  13. Leashes and Lies: Navigating the Colonial Tensions of Institutional Ethics of Research Involving Indigenous Peoples in Canada

    Directory of Open Access Journals (Sweden)

    Martha L. Stiegman

    2015-06-01

    Full Text Available Ethical standards of conduct in research undertaken at Canadian universities involving humans has been guided by the three federal research funding agencies through the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (or TCPS for short since 1998. The statement was revised for the first time in 2010 and is now commonly referred to as the TCPS2, which includes an entire chapter (Chapter 9 devoted to the subject of research involving First Nations, Inuit, and Métis peoples of Canada. While the establishment of TCPS2 is an important initial step on the long road towards decolonizing Indigenous research within the academy, our frustrations—which echo those of many colleagues struggling to do research “in a good way” (see, for example, Ball & Janyst 2008; Bull, 2008; Guta et al., 2010 within this framework—highlight the urgent work that remains to be done if university-based researchers are to be enabled by establishment channels to do “ethical” research with Aboriginal peoples. In our (and others’ experience to date, we seem to have been able to do research in a good way, despite, not because of the TCPS2 (see Castleden et al., 2012. The disconnect between the stated goals of TCPS2, and the challenges researchers face when attempting to navigate how individual, rotating members of REBs interpret the TPCS2 and operate within this framework, begs the question: Wherein lies the disconnect? A number of scholars are currently researching this divide (see for example see Guta et al. 2010; Flicker & Worthington, 2011; and Guta et al., 2013. In this editorial, we offer an anecdote to illustrate our experience regarding some of these tensions and then offer reflections about what might need to change for the next iteration of the TCPS.

  14. Arab Parents' Involvement in School Reform in Israel

    Science.gov (United States)

    Arar, Khalid; Abu-Asbah, Khaled; Nasra, Muhammed Abu

    2014-01-01

    Current research indicates that parental involvement positively influences children's academic success. This study investigates parental involvement in the Arab education system in Israel, highlighting involvement in the New Horizon reform. We interviewed school principals and parent committee chairpersons from 15 Arab schools. The study confirmed…

  15. Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.

    Science.gov (United States)

    Cheung, Peter P; de Wit, Maarten; Bingham, Clifton O; Kirwan, John R; Leong, Amye; March, Lyn M; Montie, Pam; Scholte-Voshaar, Marieke; Gossec, Laure

    2016-01-01

    Patient participation in research is increasing; however, practical guidelines to enhance this participation are lacking. Specifically within the Outcome Measures in Rheumatology (OMERACT) organization, although patients have participated in OMERACT meetings since 2002, consensus about the procedures for involving patients in working groups has not been formalized. The objective is to develop a set of recommendations regarding patient research partner (PRP) involvement in research working groups. We conducted a systematic literature review on recommendations/guidelines of PRP involvement in research; elaborated a structured consensus process involving multiple participants to develop a set of recommendations; and sought endorsement of recommendations by OMERACT. In the 18 articles included in the literature review, there was general agreement on the broad concepts for recommendations covering PRP involvement in research although they were heterogeneous in detail. Most considered PRP involvement in all phases of research with early engagement, training, and support important, but details on the content were scarce. This review informed a larger consensus-building process regarding PRP inclusion in OMERACT research. Three overarching principles and 8 recommendations were developed, discussed, and refined at OMERACT 2014. The guiding principles were endorsed during the OMERACT plenary session. These recommendations for PRP involvement in OMERACT research reinforce the importance of patient participation throughout the research process as integral members. Although the applicability of the recommendations in other research contexts should be assessed, the generalizability is expected to be high. Future research should evaluate their implementation and their effect on outcome development.

  16. Canadian governance of health research involving human subjects: is anybody minding the store?

    Science.gov (United States)

    McDonald, M

    2001-01-01

    From an ethical perspective, good governance involves the translation of collective moral intentions into effective and accountable institutional actions. With respect to the use of human subjects in Canadian health research, I contend that there have been many good intentions but very little in the way of appropriate governance arrangements. Hence, the question, "who minds the store?" is especially acute with respect to the protection of vulnerable individuals and groups that are typically recruited as subjects for health research in Canada. Beyond diagnosing failures in governance and their causes, I offer suggestions for significant reforms, including evidence-based ethics assessment, independent oversight, and greater participation of research subjects in governance. I will close with some more general reflections on ethics, law, and governance.

  17. Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review.

    Science.gov (United States)

    Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Bossert, Sabine; Strech, Daniel

    2016-01-01

    Public involvement activities (PIAs) may contribute to the governance of ethically challenging biomedical research and innovation by informing, consulting with and engaging the public in developments and decision-making processes. For PIAs to capture a population's preferences (e.g. on issues in whole genome sequencing, biobanks or genome editing), a central methodological requirement is to involve a sufficiently representative subgroup of the general public. While the existing literature focusses on theoretical and normative aspects of 'representation', this study assesses empirically how such considerations are implemented in practice. It evaluates how PIA reports describe representation objectives, the recruitment process and levels of representation achieved. PIA reports were included from a systematic literature search if they directly reported a PIA conducted in a relevant discipline such as genomics, biobanks, biotechnology or others. PIA reports were analyzed with thematic text analysis. The text analysis was guided by an assessment matrix based on PIA-specific guidelines and frameworks. We included 46 relevant reports, most focusing on issues in genomics. 27 reports (59%) explicitly described representation objectives, though mostly without adjusting eligibility criteria and recruiting methods to the specific objective. 11 reports (24%) explicitly reported to have achieved the intended representation; the rest either reported failure or were silent on this issue. Representation of study samples in PIAs in biomedical research and innovation is currently not reported systematically. Improved reporting on representation would not only improve the validity and value of PIAs, but could also contribute to PIA results being used more often in relevant policy and decision-making processes. © 2016 S. Karger AG, Basel.

  18. Charities' response to the European Commission call of interest for their involvement in the European Research Area

    CERN Document Server

    Sessano, D.

    2003-01-01

    This paper presents an exploratory study to investigate what could be the role of the charities concerned with scientific research in the European Research Area (ERA). The analysis particularly concentrates on UK and Italy. The questions on which the exploratory study was developed are: 1. “In what specific areas of the ERA did the European Commission (EC) for the involvement of charities? And could there be other areas in which charities might participate?” 2. “Given the role and situation of charities in UK and Italy, what role, if any, could they be willing to play in the ERA? Is it the same as the one proposed by the Commission or not?” In order to answer these questions, the following discussion will focus at first on a short overview of the charity sector, both at the general level and at the national level in UK and Italy. Then a brief presentation of the European Research Area will be given. The hypotheses of the study will then be presented, followed by a methodological section. Results wi...

  19. Using Interpretive Qualitative Case Studies for Exploratory Research in Doctoral Studies: A Case of Information Systems Research in Small and Medium Enterprises

    Directory of Open Access Journals (Sweden)

    Shana R. Ponelis

    2015-12-01

    Full Text Available The use of the case study method has gained mainstream acceptance in both entrepreneurship and information systems research to develop conceptual and theoretical models that are novel, yet grounded in the literature. In spite of many texts on the case study method and the growing acceptance and use of thereof, there are relatively few examples that discuss how to apply the case study method. The purpose of this paper is to provide such an example by drawing upon the author’s research for her doctoral dissertation in the discipline of information systems and entrepreneurship research. First, the use of qualitative case studies as research method is motivated, then the importance of the research paradigm is discussed and the interpretivist research paradigm justified followed by a detailed discussion of the research design. The paper concludes with a discussion of lessons learned and recommendations based on the author’s experience with using the case study method. The practical yet theoretically founded approach of this paper may be useful to doctoral students who are considering or using the case study method. Equally, supervisors and others involved in research training may find this paper useful as an illustrative example of the case study method for their students.

  20. It's not just 'What' you do, it's also the 'Way' that you do it: Patient and Public Involvement in the Development of Health Research.

    Science.gov (United States)

    Devonport, Tracey J; Nicholls, Wendy; Johnston, Lynne H; Gutteridge, Robin; Watt, Angela

    2018-03-01

    This article presents a reflective account of Patient and Public Involvement (PPI) in the development of obesity and binge eating research. We established Patient Advisory Groups (PAGs) at two English regional National Health Service (NHS) weight management services. PPI was evaluated as follows: (i) PAG members completed a Post Participation Evaluation Questionnaire, (ii) PAG meetings captured group discussion on PPI involvement, (iii) practitioner and researchers produced written reflections on PPI and (iv) sources one to three were consolidated during reflections that took place via e-mail and telephone correspondence between researchers and practitioners, culminating in a summary SKYPE meeting between one practitioner and one researcher involved in the PAGs. Results in the form of reflections suggest guidelines on undertaking PPI were helpful with regard 'what to do', but less helpful on 'how'. For example, suggestions for the management of interpersonal factors such as eliciting self-disclosure and managing power differentials are insufficiently addressed in existing guidelines. The present case study illustrated how interpersonal considerations can help or hinder the optimal use of PPI. Recommendations for practitioners and researchers planning PPI are offered.

  1. The Management of Parental Involvement in Multicultural Schools in South Africa: A Case Study

    Directory of Open Access Journals (Sweden)

    Sathiapama Michael

    2012-01-01

    Full Text Available The aim of this study was to investigate the management of parental involvement in three multicultural schools in the Umlazi District in Durban, South Africa. A literature survey resulting in a theoretical framework on parental involvement in schools, multicultural schools, and the managing of parental involvement in schools has been done. The contextual background of schools in contemporary South Africa is depicted. A qualitative research design has been used. Focus group discussions have been conducted, with a total of thirty-three principals, teachers and parents. It has found that there is a low level of meaningful contact between school and parents. Apathy exists on the side of parents, low expectations on the side of principals and teachers, and an organisational structure facilitating parent-school interaction is lacking. In managing parental involvement in multicultural schools, school managers display a lack of intercultural sensitivity.

  2. Attitudes of nursing staff towards involvement in medical end-of-life decisions: a national survey study.

    NARCIS (Netherlands)

    Albers, G.; Francke, A.L.; Veer, A.J.E. de; Bilsen, J.; Onwuteaka-Philipsen, B.D.

    2014-01-01

    Objectives: To investigate nursing staff attitudes towards involvement and role in end-of-life decisions (ELD) and the relationships with sociodemographic and work-related characteristics. Methods: Survey study among nationally representative Dutch research sample consisting of care professionals.

  3. Attitudes of nursing staff towards involvement in medical end-of-life decisions: A national survey study

    NARCIS (Netherlands)

    Albers, G.; Francke, A.L.; de Veer, A.J.E.; Bilsen, J.; Onwuteaka-Philipsen, B.D.

    2014-01-01

    Objectives: To investigate nursing staff attitudes towards involvement and role in end-of-life decisions (ELDs) and the relationships with sociodemographic and work-related characteristics. Methods: Survey study among nationally representative Dutch research sample consisting of care professionals.

  4. The Involved Ostrich

    DEFF Research Database (Denmark)

    Davies, Andrea; Dobscha, Susan; Geiger, Susi

    2008-01-01

    that the transition into parenthood can be difficult for men due to their lack of a physical connection to the pregnancy, a perception that the baby industry is not designed for them, the continuance of male stereotypes in the media, and also the time available to men to become involved in consumption activities......-natal data. Data revealed that men, according to their partner’s perceptions, used consumption as a virtual umbilical cord, although levels of consumption involvement varied from co-involvement for most purchases, to limited involvement, and/or involvement for ‘large’ items, particularly travel systems...... and technical items. This research also revealed that men partook in highly masculinized forms of “nesting,” and in general shunned pregnancy book reading; although some did engage in “research” activities such as searching the internet for product safety information. We conclude from this study...

  5. Important considerations for feasibility studies in physical activity research involving persons with multiple sclerosis: a scoping systematic review and case study.

    Science.gov (United States)

    Learmonth, Yvonne C; Motl, Robert W

    2018-01-01

    Much research has been undertaken to establish the important benefits of physical activity in persons with multiple sclerosis (MS). There is disagreement regarding the strength of this research, perhaps because the majority of studies on physical activity and its benefits have not undergone initial and systematic feasibility testing. We aim to address the feasibility processes that have been examined within the context of physical activity interventions in MS. A systematic scoping review was conducted based on a literature search of five databases to identify feasibility processes described in preliminary studies of physical activity in MS. We read and extracted methodology from each study based on the following feasibility metrics: process (e.g. recruitment), resource (e.g. monetary costs), management (e.g. personnel time requirements) and scientific outcomes (e.g. clinical/participant reported outcome measures). We illustrate the use of the four feasibility metrics within a randomised controlled trial of a home-based exercise intervention in persons with MS. Twenty-five studies were identified. Resource feasibility (e.g. time and resources) and scientific outcomes feasibility (e.g. clinical outcomes) methodologies were applied and described in many studies; however, these metrics have not been systematically addressed. Metrics related to process feasibility (e.g. recruitment) and management feasibility (e.g. human and data management) are not well described within the literature. Our case study successfully enabled us to address the four feasibility metrics, and we provide new information on management feasibility (i.e. estimate data completeness and estimate data entry) and scientific outcomes feasibility (i.e. determining data collection materials appropriateness). Our review highlights the existing research and provides a case study which assesses important metrics of study feasibility. This review serves as a clarion call for feasibility trials that will

  6. The Human Rights Context for Ethical Requirements for Involving People with Intellectual Disability in Medical Research

    Science.gov (United States)

    Iacono, T.; Carling-Jenkins, R.

    2012-01-01

    Background: The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and…

  7. A Study of Factors Related to Dissertation Progress among Doctoral Candidates: Focus on Students' Research Self-Efficacy as a Result of Their Research Training and Experiences.

    Science.gov (United States)

    Faghihi, Forooz; Rakow, Ernest A.; Ethington, Corinna

    This study examined relationships among doctoral candidates' background characteristics, research preparation, research environment, research involvement, student-advisor relationship, research self-efficacy, and dissertation progress. The study focused on differences in research self-efficacy and dissertation progress among students from the…

  8. What Researchers Should Know and be Able to do When Contemplating Involvement in Education and Outreach

    Science.gov (United States)

    Ridky, R. W.

    2004-12-01

    At some point in their careers, many researchers are motivated to share what they have learned with a wider audience. As their studies mature, and national awareness for more effective integration of research and education intensifies, researchers are increasingly directing efforts toward informal and pre-college educational sectors. Each initiative comes with good intentions, but many fall short of intended benefit. Quality education and outreach programs develop from the same precepts that shape research programs of high professional standing. A researcher is most likely to make useful contributions when they are willing and able to implement familiar research principles to broader educational endeavors. As with research endeavors, principles of significance, literacy, design, feasibility, analysis and dissemination need to be regarded as essential indicators of education program quality. It is helpful to provide researchers who are contemplating more active educational involvement with more than casual understanding of the purposes underlying their pending contributions. Such understanding is premised on the tenet that education and research are always in the public service and therefore inextricably bound at all levels. Both research and education have, as their ultimate goal, enhanced scientific literacy of the citizenry. By example, it can be shown that the best-supported programs, within government and academia, recognize that the way they translate knowledge and make it available to scientific organizations and the public is critical to their intrinsic societal value and level of support. As education conjures up a host of operational meanings arising from one's own values and experiences, the knowledge researchers bring to pre-college and informal educational settings is often based on personal experience rather than on education research, practice and policy. Researchers may believe that because they spent 13 years in school, an additional 4 years at a

  9. Setting Priorities for Gerontological Social Work Research: A National Delphi Study

    Science.gov (United States)

    Burnette, Denise; Morrow-Howell, Nancy; Chen, Li-Mei

    2003-01-01

    Purpose: An increasingly important task for all disciplines involved in aging research is to identify and prioritize areas for investigation. This article reports the results of a national Delphi study on setting research priorities for gerontological social work. Design and Methods: Delphi methodology, a structured process for eliciting and…

  10. A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory.

    Science.gov (United States)

    Tierney, Edel; McEvoy, Rachel; O'Reilly-de Brún, Mary; de Brún, Tomas; Okonkwo, Ekaterina; Rooney, Michelle; Dowrick, Chris; Rogers, Anne; MacFarlane, Anne

    2016-06-01

    There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine - normalized - way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization - definition, enrolment, enactment and appraisal. Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Twenty-six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co-governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co-governance and dissemination of research processes and findings. © 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  11. Research priority setting for health policy and health systems strengthening in Nigeria: the policymakers and stakeholders perspective and involvement.

    Science.gov (United States)

    Uneke, Chigozie Jesse; Ezeoha, Abel Ebeh; Ndukwe, Chinwendu Daniel; Oyibo, Patrick Gold; Onwe, Friday; Aulakh, Bhupinder Kaur

    2013-01-01

    Nigeria is one of the low and middle income countries (LMICs) facing severe resource constraint, making it impossible for adequate resources to be allocated to the health sector. Priority setting becomes imperative because it guides investments in health care, health research and respects resource constraints. The objective of this study was to enhance the knowledge and understanding of policymakers on research priority setting and to conduct a research priority setting exercise. A one-day evidence-to-policy research priority setting meeting was held. The meeting participants included senior and middle level policymakers and key decision makers/stakeholders in the health sector in Ebonyi State southeastern Nigeria. The priorities setting meeting involved a training session on priority setting process and conduction of priority setting exercise using the essential national health research (ENHR) approach. The focus was on the health systems building blocks (health workforce; health finance; leadership/governance; medical products/technology; service delivery; and health information/evidence). Of the total of 92 policymakers invited 90(97.8%) attended the meeting. It was the consensus of the policymakers that research should focus on the challenges of optimal access to health products and technology; effective health service delivery and disease control under a national emergency situation; the shortfalls in the supply of professional personnel; and the issues of governance in the health sector management. Research priority setting exercise involving policymakers is an example of demand driven strategy in the health policymaking process capable of reversing inequities and strengthening the health systems in LMICs.

  12. Extended Communication Efforts Involved with College Long-Distance Relationships

    Science.gov (United States)

    Firmin, Michael W.; Firmin, Ruth L.; Merical, Kaile Lorenzen

    2013-01-01

    The present phenomenological, qualitative research study involved in-depth interviews of all 16 female, sophomore students involved in respective distance relationships at a private, selective, comprehensive, Midwest university. Among other results found in the study, the present article focuses on communication dynamics involved with the…

  13. Involving older people in research: practical considerations when using the authenticity criteria in constructivist inquiry

    Science.gov (United States)

    Wilson, Christine Brown; Clissett, Philip

    2011-01-01

    Aim The purpose of this paper is to identify practical suggestions that could enable other researchers to consider how quality may be evidenced using constructivist principles including the perspectives of older people and their caregivers. Background Constructivism suggests that reality is part of a social construction, which holds different meanings for each person, in which people are active agents, making autonomous decisions. This approach to research has been identified as suitable for health and social care professionals because these underpinning principles reflect the values of these professions, facilitating the involvement of users and carers. The authenticity criteria have been developed to reflect these philosophical principles but have been criticized for their inaccessible language. To incorporate user and carer perspectives, the criteria have been revised into a more accessible model matrix known as the AldreVast Sjuharad criteria. Discussion This paper reports on two constructivist studies that explored relationships between older people, families and staff in different settings – the community and care homes. Examples from both settings demonstrate how the perspectives of users and carers were incorporated throughout the research process. Following the AldreVast Sjuharad model matrix, practical guidance is provided on how the quality of constructivist research may be implemented in nursing research. Conclusions The different settings in this paper influenced how the AldreVast Sjuharad model matrix was applied. Further work is needed in exploring how the perspective of users and carers may be incorporated into the quality process of constructivist research. PMID:21073505

  14. Nurse leaders' perceptions of the ethical recruitment of study subjects in clinical research.

    Science.gov (United States)

    Nurmi, Sanna-Maria; Pietilä, Anna-Maija; Kangasniemi, Mari; Halkoaho, Arja

    2015-11-01

    The aim of this study was to describe nurse leaders' perceptions of ethical recruitment in clinical research. Nurse leaders are expected to get involved in clinical research, but there are few studies that focus on their role, particularly the ethical issues. Qualitative data were collected from ten nurse leaders using thematic one-to-one interviews and analysed with content analysis. Nurse leaders considered clinical research at their workplace in relation to the key issues that enabled ethical recruitment of study subjects in clinical research. These were: early information and collaboration for incorporating clinical research in everyday work, an opportune and peaceful recruitment moment and positive research culture. Getting involved in clinical research is part of the nurse leader's professional responsibility in current health care. They have an essential role to play in ensuring that recruitment is ethical and that the dignity of study subjects is maintained. The duty of nurse leaders is to maintain good contact with other collaborators and to ensure good conditions for implementing clinical research at their site. This requires a comprehensive understanding of the overall situation on their wards. Implementing clinical research requires careful planning, together with educating, supporting and motivating nursing staff. © 2014 John Wiley & Sons Ltd.

  15. Family members' involvement in elder care provision in nursing homes and their considerations about financial compensation: a qualitative study.

    Science.gov (United States)

    Habjanič, Ana; Pajnkihar, Majda

    2013-01-01

    The aim of this study was to establish how family members are involved in elder care provision in nursing homes; this included research into their feelings about potentially extending their involvement to obtain financial benefits as compensation for high accommodation costs. Family members remain involved in the caring process after their relatives have been admitted to an institution. On average, accommodation costs in nursing homes in Slovenia have risen above the residents' retirement pension, and families must supplement the difference. Because of this, familial involvement should be linked to reduced accommodation costs. This research employed a non-experimental, descriptive study design through unstructured interviews. Participants included fifty family members (n=50) who visit their relatives in nursing homes. Data were collected in 2010 at five nursing homes in Slovenia and processed by means of conventional content analysis. The major themes that emerged from the content analysis, describing family involvement, were as follows: visiting and making oneself useful, delivery of items for personal use, hands-on care, physical therapy and organization of nursing home activities. Family members showed some interest in receiving financial compensation for their involvement. The proposed financial compensation may be a delicate and morally questionable matter but would involve fairness and transparency, while enabling easier organization of elder care provision. Eventually, nursing home residents' well-being could be improved. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

  16. The multiple imputation method: a case study involving secondary data analysis.

    Science.gov (United States)

    Walani, Salimah R; Cleland, Charles M

    2015-05-01

    To illustrate with the example of a secondary data analysis study the use of the multiple imputation method to replace missing data. Most large public datasets have missing data, which need to be handled by researchers conducting secondary data analysis studies. Multiple imputation is a technique widely used to replace missing values while preserving the sample size and sampling variability of the data. The 2004 National Sample Survey of Registered Nurses. The authors created a model to impute missing values using the chained equation method. They used imputation diagnostics procedures and conducted regression analysis of imputed data to determine the differences between the log hourly wages of internationally educated and US-educated registered nurses. The authors used multiple imputation procedures to replace missing values in a large dataset with 29,059 observations. Five multiple imputed datasets were created. Imputation diagnostics using time series and density plots showed that imputation was successful. The authors also present an example of the use of multiple imputed datasets to conduct regression analysis to answer a substantive research question. Multiple imputation is a powerful technique for imputing missing values in large datasets while preserving the sample size and variance of the data. Even though the chained equation method involves complex statistical computations, recent innovations in software and computation have made it possible for researchers to conduct this technique on large datasets. The authors recommend nurse researchers use multiple imputation methods for handling missing data to improve the statistical power and external validity of their studies.

  17. What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study.

    Science.gov (United States)

    Parsons, Suzanne; Starling, Bella; Mullan-Jensen, Christine; Tham, Su-Gwan; Warner, Kay; Wever, Kim

    2016-01-07

    To explore European-based pharmaceutical industry professionals' beliefs about patient and public involvement (PPI) in medicines research and development (R&D). Pharmaceutical companies in the UK, Poland and Spain. 21 pharmaceutical industry professionals, four based in the UK, five with pan-European roles, four based in Spain and eight based in Poland. Qualitative interview study (telephone and face-to-face, semistructured interviews). All interviews were audio taped, translated (where appropriate) and transcribed for analysis using the Framework approach. 21 pharmaceutical industry professionals participated. Key themes were: beliefs about (1) whether patients and the public should be involved in medicines R&D; (2) the barriers and facilitators to PPI in medicines R&D and (3) how the current relationships between the pharmaceutical industry, patient organisations and patients influence PPI in medicines R&D. Although interviewees appeared positive about PPI, many were uncertain about when, how and which patients to involve. Patients and the public's lack of knowledge and interest in medicines R&D, and the pharmaceutical industry's lack of knowledge, interest and receptivity to PPI were believed to be key challenges to increasing PPI. Interviewees also believed that relationships between the pharmaceutical industry, patient organisations, patients and the public needed to change to facilitate PPI in medicines R&D. Existing pharmaceutical industry codes of practice and negative media reporting of the pharmaceutical industry were also seen as negative influences on these relationships. 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/

  18. Parental E-nvolvement: A Phenomenological Research on Electronic Parental Involvement

    Science.gov (United States)

    Sad, Süleyman Nihat; Konca, Ahmet Sami; Özer, Niyazi; Acar, Feride

    2016-01-01

    This phenomenological study explored parental e-nvolvement (or electronic parental involvement), defined as "parental efforts to plan, engage in, support, monitor and/or assess the learning experiences of their children either at home or at school predominantly using technological devices and media." Data were gathered from 23…

  19. 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.

  20. Patient involvement in Danish health care

    DEFF Research Database (Denmark)

    Vrangbaek, Karsten

    2015-01-01

    PURPOSE: The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. DESIGN/METHODOLOGY/APPROACH: The paper presents a preliminary framework for anal......PURPOSE: The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. DESIGN/METHODOLOGY/APPROACH: The paper presents a preliminary framework...... for analysis of patient involvement in health care. This framework is used to analyze key governance features of patient involvement in Denmark based on previous research papers and reports describing patient involvement in Danish health care. FINDINGS: Patient involvement is important in Denmark...... be identified when pursuing the strategies at the same time. RESEARCH LIMITATIONS/IMPLICATIONS: Because of the chosen research approach, the research results may lack generalizability. Therefore, researchers are encouraged to test the proposed framework further. PRACTICAL IMPLICATIONS: The paper includes...

  1. Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research.

    Science.gov (United States)

    Brighton, Lisa Jane; Pask, Sophie; Benalia, Hamid; Bailey, Sylvia; Sumerfield, Marion; Witt, Jana; de Wolf-Linder, Susanne; Etkind, Simon Noah; Murtagh, Fliss E M; Koffman, Jonathan; Evans, Catherine J

    2018-01-01

    Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in

  2. COMPARISON OF RESEARCH ENGAGEMENT OF PHD STUDENTS AT VARIOUS STUDY PROGRAMS AT CULS PRAGUE: AN INTRODUCTORY STUDY

    Directory of Open Access Journals (Sweden)

    FLÉGL, Martin

    2014-12-01

    Full Text Available In an attempt to improve the quality of doctoral studies and the satisfaction of PhD students at the Czech University of Life Sciences Prague (CULS Prague the authors disseminated online questionnaire among all PhD students in May and June 2014. The questionnaire covered areas related to doctoral study, PhD supervisors, doctoral scholarship, research publications, and last but not least, to satisfaction with the doctoral study. In this article responses related to research, such as allocation of time to doctoral studies, allocation of time to research, involvement in research projects and satisfaction with research outputs. The authors provide comparison of all above mentioned domains according to faculties as well as form of doctoral studies at CULS Prague.

  3. Whistleblowing: An integrative literature review of data-based studies involving nurses.

    Science.gov (United States)

    Jackson, Debra; Hickman, Louise D; Hutchinson, Marie; Andrew, Sharon; Smith, James; Potgieter, Ingrid; Cleary, Michelle; Peters, Kath

    2014-01-01

    Abstract Aim: To summarise and critique the research literature about whistleblowing and nurses. Whistleblowing is identified as a crucial issue in maintenance of healthcare standards and nurses are frequently involved in whistleblowing events. Despite the importance of this issue, to our knowledge an evaluation of this body of the data-based literature has not been undertaken. An integrative literature review approach was used to summarise and critique the research literature. A comprehensive search of five databases including Medline, CINAHL, PubMed and Health Science: Nursing/Academic Edition, and Google, were searched using terms including: 'Whistleblow*,' 'nurs*.' In addition, relevant journals were examined, as well as reference lists of retrieved papers. Papers published during the years 2007-2013 were selected for inclusion. Fifteen papers were identified, capturing data from nurses in seven countries. The findings in this review demonstrate a growing body of research for the nursing profession at large to engage and respond appropriately to issues involving suboptimal patient care or organisational wrongdoing. Nursing plays a key role in maintaining practice standards and in reporting care that is unacceptable although the repercussions to nurses who raise concerns are insupportable. Overall, whistleblowing and how it influences the individual, their family, work colleagues, nursing practice and policy overall, requires further national and international research attention.

  4. Ethics education in research involving human beings in undergraduate medicine curriculum in Brazil.

    Science.gov (United States)

    Novaes, Maria Rita Garbi; Guilhem, Dirce; Barragan, Elena; Mennin, Stewart

    2013-12-01

    The Brazilian national curriculum guidelines for undergraduate medicine courses inspired and influenced the groundwork for knowledge acquisition, skills development and the perception of ethical values in the context of professional conduct. The evaluation of ethics education in research involving human beings in undergraduate medicine curriculum in Brazil, both in courses with active learning processes and in those with traditional lecture learning methodologies. Curricula and teaching projects of 175 Brazilian medical schools were analyzed using a retrospective historical and descriptive exploratory cohort study. Thirty one medical schools were excluded from the study because of incomplete information or a refusal to participate. Active research for information from institutional sites and documents was guided by terms based on 69 DeCS/MeSH descriptors. Curriculum information was correlated with educational models of learning such as active learning methodologies, tutorial discussions with integrated curriculum into core modules, and traditional lecture learning methodologies for large classes organized by disciplines and reviewed by occurrence frequency of ethical themes and average hourly load per semester. Ninety-five medical schools used traditional learning methodologies. The ten most frequent ethical themes were: 1--ethics in research (26); 2--ethical procedures and advanced technology (46); 3--ethic-professional conduct (413). Over 80% of schools using active learning methodologies had between 50 and 100 hours of scheduled curriculum time devoted to ethical themes whereas more than 60% of traditional learning methodology schools devoted less than 50 hours in curriculum time to ethical themes. The data indicates that medical schools that employ more active learning methodologies provide more attention and time to ethical themes than schools with traditional discipline-based methodologies. Given the importance of ethical issues in contemporary medical

  5. The consultation of rugby players in co-developing a player health study: feasibility and consequences of sports participants as research partners.

    Science.gov (United States)

    Davies, Madeleine A M; Balai, Edward; Adams, Jo; Carter, John-Henry; Judge, Andrew; Newton, Julia L; Arden, Nigel K

    2017-01-01

    Many funding bodies within the United Kingdom and globally have encouraged public involvement in research. The Department of Health has also called public involvement a sign of good research. Despite the wide acceptance of public involvement improving many aspects of research, from its design to its communication, involvement has varied levels of implementation across different fields of research. Sports people have rarely been involved in research, partly as this research tends not to be funded by mainstream funding bodies. This may lead to a lower research quality, not founded in player ('service user') experiences. When creating a study of former rugby player health, we were very keen to involve rugby players, understand their thoughts on player health, and their playing experiences. This article explains how rugby players were involved in several ways, but mainly in group discussions during the design stage. These groups helped to inform our study's aims and questionnaire, ensure the questionnaire would capture player experiences and answer questions relevant to players, that they would like to understand after their participation in rugby. We found that these groups were easy to arrange, and that in only one session with each group, we were given many ideas of how to improve the questionnaire and study. We believe that other studies in sports should involve sports people, and that this is a useful activity that will change data collection forms and processes, improving the research, helping researchers, and making studies more suitable for players who take part in them. Background Patient and public involvement ('involvement') in the UK has increased in accordance with funding requirements, patient-centered health policy initiatives and reporting of the positive impact of involvement for those involved, research and researchers. However, involvement has not been implemented equally across all disease areas and populations. The aim of this process was to

  6. Bioethical Principles of Biomedical Research Involving Animals

    Directory of Open Access Journals (Sweden)

    Bakir Mehić

    2011-08-01

    Full Text Available A major requirement both of national and international ethical codes for human experimentation, and of national legislation in many cases, is that new substances or devices should not be used for the first time on human beings unless previous tests on animals have provided a reasonable presumption of their safety. That is so called: Good Clinical Praxis (GCP. There are two international ethical codes intended principally for the guidance of countries or institutions that have not yet formulated their own ethical requirements for human experimentation: The Declaration of Helsinki of the World Medical Association and The Proposed International Guidelines for Biomedical Research Involving Human Subjects of the Council for International Organizations of Medical Sciences and the World Health Organization[1].Animal experimentation is fundamental to the biomedical sciences, not only for the advancement of specific vital processes, but also for the improvement of methods of prevention, diagnosis, and treatment of disease both in man and in animals. The use of animals is also indispensable for testing the potency and safety of biological substances used in human and veterinary medicine, as well as for determining the toxicity of the rapidly growing number of molecules that never existed before in nature and which may represent a hazard to health. This extensive exploitation by man of animals implies philosophical and moral problems that are not peculiar to their use for scientific purposes, and there are no objective ethical criteria by which to judge claims and counterclaims in such matters[2]. However, there is a consensus that „deliberate cruelty is repugnant”.While many countries have general laws or regulations imposing penalties for ill-treatment of animals, relatively few make specific provision for their use for scientific purposes. Because of differing legal systems and cultural backgrounds there are varying approaches to the use of

  7. Describing the first 2000 registrations to the Research Registry®: A study protocol

    Directory of Open Access Journals (Sweden)

    Alexander J. Fowler

    Full Text Available Background: In 2013, the Declaration of Helsinki was updated and required the registration of all research studies involving human participants. Prior registries focussed on the registration of clinical trials and systematic reviews, and we estimate that only 10% of observational research is registered in a publically accessible registry. The Research Registry® was established to provide a venue of registration for any study, prospectively or retrospectively, involving human participants. This protocol describes the analysis for the first 2000 registrations received to the Research Registry®. Methods and analysis: Data for each registration to the Research Registry® (www.researchregistry.com, adapted from the World Health Organisation minimum data set, has been collected since the launch of the registry in 2015. A weekly curation process ensures that inappropriate registrations, such as duplicate studies or those not involving human participants, are removed from the registry. We will present the characteristics of the first 2000 registrations and how they have changed overtime. A quality score will be calculated for each registration by two independent teams, and inter-rater reliability will be calculated. Funding sources of work registered will also be presented. This process will also be performed for the systematic review portion of the registry (‘The Review Registry’, which will be considered separately. Ethics and dissemination: Ethical approval is not required for this study as it involves no human participants. The findings will be presented at international conferences and published in a peer reviewed journal.

  8. The current structure of key actors involved in research on land and soil degradation

    Science.gov (United States)

    Escadafal, Richard; Barbero, Celia; Exbrayat, Williams; Marques, Maria Jose; Ruiz, Manuel; El Haddadi, Anass; Akhtar-Schuster, Mariam

    2013-04-01

    Land and soil conservation topics, the final mandate of the United Convention to Combat desertification in drylands, have been diagnosed as still suffering from a lack of guidance. On the contrary, climate change and biodiversity issues -the other two big subjects of the Rio Conventions- seem to progress and may benefit from the advice of international panels. Arguably the weakness of policy measures and hence the application of scientific knowledge by land users and stakeholders could be the expression of an inadequate research organization and a lack of ability to channel their findings. In order to better understand the size, breadth and depth of the scientific communities involved in providing advice to this convention and to other bodies, this study explores the corpus of international publications dealing with land and/or with soils. A database of several thousands records including a significant part of the literature published so far was performed using the Web of Science and other socio-economic databases such as FRANCIS and CAIRN. We extracted hidden information using bibliometric methods and data mining applied to these scientific publications to map the key actors (laboratories, teams, institutions) involved in research on land and on soils. Several filters were applied to the databases in combination with the word "desertification". The further use of Tetralogie software merges databases, analyses similarities and differences between keywords, disciplines, authors and regions and identifies obvious clusters. Assessing their commonalities and differences, the visualisation of links and gaps between scientists, organisations, policymakers and other stakeholders is possible. The interpretation of the 'clouds' of disciplines, keywords, and techniques will enhance the understanding of interconnections between them; ultimately this will allow diagnosing some of their strengths and weaknesses. This may help explain why land and soil degradation remains a

  9. Peer Involvement in Adolescent Dating Violence

    Science.gov (United States)

    Stephenson, Pam S.; Martsolf, Donna; Draucker, Claire Burke

    2013-01-01

    This study investigated the ways in which peers are involved in adolescent dating violence. Eighty-eight young adults aged 18-21 were interviewed and asked to reflect on aggressive dating relationships they experienced as teens. The researchers used grounded theory to analyze the data. Findings showed that male and female peers were involved in…

  10. What Difference Does Patient and Public Involvement Make and What Are Its Pathways to Impact? Qualitative Study of Patients and Researchers from a Cohort of Randomised Clinical Trials.

    Directory of Open Access Journals (Sweden)

    Louise Dudley

    Full Text Available Patient and public involvement (PPI is advocated in clinical trials yet evidence on how to optimise its impact is limited. We explored researchers' and PPI contributors' accounts of the impact of PPI within trials and factors likely to influence its impact.Semi-structured qualitative interviews with researchers and PPI contributors accessed through a cohort of randomised clinical trials. Analysis of transcripts of audio-recorded interviews was informed by the principles of the constant comparative method, elements of content analysis and informant triangulation.We interviewed 21 chief investigators, 10 trial managers and 17 PPI contributors from 28 trials. The accounts of informants within the same trials were largely in agreement. Over half the informants indicted PPI had made a difference within a trial, through contributions that influenced either an aspect of a trial, or how researchers thought about a trial. According to informants, the opportunity for PPI to make a difference was influenced by two main factors: whether chief investigators had goals and plans for PPI and the quality of the relationship between the research team and the PPI contributors. Early involvement of PPI contributors and including them in responsive (e.g. advisory groups and managerial (e.g. trial management groups roles were more likely to achieve impact compared to late involvement and oversight roles (e.g. trial steering committees.Those seeking to enhance PPI in trials should develop goals for PPI at an early stage that fits the needs of the trial, plan PPI implementation in accordance with these goals, invest in developing good relationships between PPI contributors and researchers, and favour responsive and managerial roles for contributors in preference to oversight-only roles. These features could be used by research funders in judging PPI in trial grant applications and to inform policies to optimise PPI within trials.

  11. Theoretical Foundations of Research Focused on HIV Prevention Among Substance-Involved Women: A Review of Observational and Intervention Studies.

    Science.gov (United States)

    Auerbach, Judith D; Smith, Laramie R

    2015-06-01

    Although substance use continues to be a significant component of HIV risk among women worldwide, to date, relatively little attention has been paid in research, services, or policy to substance-involved women (SIW). HIV acquisition for SIW stems from transmission risks directly related to substance use and risks associated with sexual activity in which power to negotiate risk and safety are influenced by dynamics of male partnerships, sex work, and criminalization (of both drug use and sex work), among other factors. As such, HIV risk for SIW resides as much in the environment—physical, social, cultural, economic, and political—in which drug use occurs as it does from transmission-related behaviors of individual women. To reduce HIV infections among SIW, it is important to specify the interaction of individual- and environmental-level factors, including, but not limited to those related to women's own substance use, that can and ought to be changed. This involves theorizing about the interplay of gender, substance use, and HIV risk, and incorporating that theoretical understanding into intervention design and evaluation. A review of the published literature focused on HIV prevention among SIW revealed a general lack of theoretical and conceptual foundation specific to the gender-related and environmental drivers of HIV in this population. Greater theoretical linkages to intersectionality and syndemic approaches are recommended to better identify and target relevant mechanisms by which the interplay of gender dynamics and substance use potentiate the likelihood of HIV acquisition and transmission among SIW.

  12. Development and testing of a medline search filter for identifying patient and public involvement in health research.

    Science.gov (United States)

    Rogers, Morwenna; Bethel, Alison; Boddy, Kate

    2017-06-01

    Research involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively. To design a search filter to identify literature where patient and public involvement (PPI) was used in health research. A reference standard of 172 PPI papers was formed. The references were divided into a development set and a test set. Search terms were identified from common words, phrases and synonyms in the development set. These terms were combined as a search strategy for medline via OvidSP, which was then tested for sensitivity against the test set. The resultant search filter was then assessed for sensitivity, specificity and precision using a previously published systematic review. The search filter was found to be highly sensitive 98.5% in initial testing. When tested against results generated by a 'real-life' systematic review, the filter had a specificity of 81%. However, sensitivity dropped to 58%. Adjustments to the population group of terms increased the sensitivity to 73%. The PPI filter designed for medline via OvidSP could aid information specialists and researchers trying to find literature specific to PPI. © 2016 Health Libraries Group.

  13. A typology of place attachment and activity involvement

    Science.gov (United States)

    Andrew J. Mowen; Alan R. Graefe; Randy J. Virden

    1998-01-01

    While previous research suggests that place attachment and activity involvement impact visitor perceptions, it has not examined the simultaneous effects of these affective constructs. This study develops a typology of both place attachment and activity involvement. It examines variations between attachment-involvement levels and visitor evaluations of quality. Results...

  14. 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.

  15. Job Satisfaction, Organizational Commitment and Job Involvement: The Mediating Role of Job Involvement.

    Science.gov (United States)

    Ćulibrk, Jelena; Delić, Milan; Mitrović, Slavica; Ćulibrk, Dubravko

    2018-01-01

    We conducted an empirical study aimed at identifying and quantifying the relationship between work characteristics, organizational commitment, job satisfaction, job involvement and organizational policies and procedures in the transition economy of Serbia, South Eastern Europe. The study, which included 566 persons, employed by 8 companies, revealed that existing models of work motivation need to be adapted to fit the empirical data, resulting in a revised research model elaborated in the paper. In the proposed model, job involvement partially mediates the effect of job satisfaction on organizational commitment. Job satisfaction in Serbia is affected by work characteristics but, contrary to many studies conducted in developed economies, organizational policies and procedures do not seem significantly affect employee satisfaction.

  16. Job Satisfaction, Organizational Commitment and Job Involvement: The Mediating Role of Job Involvement

    Science.gov (United States)

    Ćulibrk, Jelena; Delić, Milan; Mitrović, Slavica; Ćulibrk, Dubravko

    2018-01-01

    We conducted an empirical study aimed at identifying and quantifying the relationship between work characteristics, organizational commitment, job satisfaction, job involvement and organizational policies and procedures in the transition economy of Serbia, South Eastern Europe. The study, which included 566 persons, employed by 8 companies, revealed that existing models of work motivation need to be adapted to fit the empirical data, resulting in a revised research model elaborated in the paper. In the proposed model, job involvement partially mediates the effect of job satisfaction on organizational commitment. Job satisfaction in Serbia is affected by work characteristics but, contrary to many studies conducted in developed economies, organizational policies and procedures do not seem significantly affect employee satisfaction. PMID:29503623

  17. Trust and Parents' Involvement in Schools of Choice

    Science.gov (United States)

    Strier, Michal; Katz, Hagai

    2016-01-01

    Education researchers and policymakers have been focusing for the last three decades on increasing parental involvement in schools. Their work focused on the positive effects that parental involvement has on varied aspects of school quality and functioning. In this study we examined "trust," a known predictor of parental involvement in…

  18. TOXICOLOGICAL RESEARCH INVOLVING HUMANS: ETHICAL AND REGULATORY CONSIDERATIONS

    Science.gov (United States)

    This paper discusses the need for the Society of Toxicology (SOT) to develop a policy for ethical research in humans, and a review for publication of these studies. Observations on human beings have been the foundation upon which toxicologic knowledge has been built since the in...

  19. Reviewing the Effect of Religion, Materialism and Demographic Features of the Consumer on Mental Involvement in Fashion Clothing (Case Study: Yazd

    Directory of Open Access Journals (Sweden)

    Seyed Mahdi Alhosseini Almodarresi

    2015-12-01

    Full Text Available Among the factors that are necessary to facilitate the consumer’s daily life with high mental involvement, fashion clothing is an important and significant factor for many consumers. According to the importance of the subject, this research reviewed the effect of religion, materialism and demographic features of the consumer on mental involvement in fashion clothing among citizens of Yazd. Confirmatory factor analysis method has been applied in analytical statistics of this research to determine the role and position of each one of the research elements by using Amos software. Correlation test has been used in order to review the relations between fashion clothing involvement and its dimensions, and linear regression test in order to determine the effect manner of involvement in fashion clothing and mental knowledge on confidence in fashion decision making. The statistical population includes all the individuals above 20 years old in Yazd City; the sample size was calculated 99 individuals by using Cochran formula. The research results showed that religion and materialism have significant effect on mental involvement in fashion clothing and involvement has a positive and significant effect on fashion decision making confidence. Furthermore, mental involvements in fashion clothing and mental knowledge have a positive and significant effect on fashion decision making confidence and it was specified in the reviewing of the relation between demographic factors (sex, age,… and the studied variables that the correlation between them was not significant even in the confidence level of 95 percent.

  20. The Public Health Service guidelines. Governing research involving human subjects: An analysis of the policy-making process

    Science.gov (United States)

    Frankel, M. S.

    1972-01-01

    The policy making process which led to development of the Public Health Service Guidelines governing research involving human subjects is outlined. Part 1 examines the evolution of PHS Guidelines, tracing (1) evolution of thought and legal interpretation regarding research using human subjects; (2) initial involvement of the Federal government; (3) development of the government's research program; (4) the social-political environment in which formal government policy was developed; and (5) various policy statements issued by the government. Part 2 analyzes the process by which PHS Guidelines were developed and examines the values and other underlying factors which contributed to their development. It was concluded that the evolution of the Guidelines is best understood within the context of a mixed-scanning strategy. In such a strategy, policy makers make fundamental decisions regarding the basic direction of policy and subsequent decisions are made incrementally and within the contexts set by the original fundamental decisions.

  1. Extent, quality and impact of patient and public involvement in antimicrobial drug development research: A systematic review.

    Science.gov (United States)

    Evans, David; Bird, Emma; Gibson, Andy; Grier, Sally; Chin, Teh Li; Stoddart, Margaret; MacGowan, Alasdair

    2018-02-01

    Patient and public involvement (PPI) is increasingly recognized as bringing a range of benefits to clinical and health services research. Recent systematic reviews have identified and synthesized many benefits (eg higher recruitment rates) and some costs (eg extra time need). Much of the literature focuses on PPI in long-term conditions rather than more acute health care in which the majority of microbiological research is undertaken. The aim was to identify the extent, quality and impact of PPI in antimicrobial drug development research. Objectives were to identify any relevant reporting of PPI in antimicrobial research; appraise the quality of reporting on PPI using recognized PPI reporting and critical appraisal tools; and extract and synthesize data on the impact of PPI. A systematic review was undertaken with a search strategy based on four word groups (PPI, patients, antimicrobial drug development and outcomes). Eight online databases were searched. English language publication, publication between 1996 and 2016 and studies describing PPI in antimicrobial drug development research. No studies were found through online searching that met the search strategy and inclusion criteria. One relevant protocol paper with a brief mention of PPI was identified through expert recommendation. Commentary papers recommending PPI were identified through website searching and expert opinion. Despite strong policy guidance encouraging PPI at the international and national levels, and anecdotal accounts of PPI taking place, evidence for the extent, quality and impact of PPI in antimicrobial drug development research has not yet appeared in the peer-reviewed literature. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  2. The influence of contextual factors on patient involvement during follow-up consultations after colorectal cancer surgery: a case study.

    Science.gov (United States)

    Thomsen, Thora G; Soelver, Lisbeth; Hølge-Hazelton, Bibi

    2017-11-01

    To identify the contextual factors that influence individual patient involvement during colorectal cancer surgical follow-up consultations. The healthcare system is subject to the requirement and expectation of greater involvement of patients and relatives. Increased patient involvement requires the development and implementation of new communication initiatives. Research shows that it is also necessary to consider the contextual circumstances surrounding patient involvement in specific situations. Case study of a single Danish outpatient clinic, which allows the issues and circumstances involved in an everyday situation to be captured. 12 nonparticipative observations of outpatient visits and, subsequently, seven in-depth patient interviews. Content analysis based on a dialogical, interactive framework, which underpinned the identification of current contextual factors. The results showed five contextual factors that seemed to have an impact on patient involvement. The first, 'Two dimensions of patient involvement: treatment-oriented and person-oriented' highlighted a dual interpretation of patient involvement in the consultation situation. The two dimensions seemed to be influenced by four additional factors: 'Doctors leading the agenda', 'Traditional health professional roles', 'Unclear responsibilities' and 'Guidance primarily focused on treatment'. The results showed how patient involvement in clinical practice could be understood as a two-way movement, in which patients are invited to participate in clinical practice, while health professionals are invited to participate in the patients' lives. The movement will change from situation to situation and is influenced by several contextual factors. The results can help doctors and nurses to navigate using a goal-oriented approach towards patient involvement. The study makes visible the need for research-based development of the independent role of the nursing profession in cancer care follow-up, with a view to

  3. Current Research Studies

    Science.gov (United States)

    ... Success Home > Explore Research > Current Research Studies Current Research Studies Email Print + Share The Crohn’s & Colitis Foundation ... conducted online. Learn more about IBD Partners. Clinical Research Alliance The Clinical Research Alliance is a network ...

  4. Building the Science of Research Management: What Can Research Management Learn from Education Research?

    Science.gov (United States)

    Huang, Jun Song; Hung, Wei Loong

    2018-01-01

    Research management is an emerging field of study and its development is significant to the advancement of research enterprise. Developing the science of research management requires investigating social mechanisms involved in research management. Yet, studies on social mechanisms of research management is lacking in the literature. To address…

  5. Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.

    Science.gov (United States)

    Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Strech, Daniel

    2014-01-01

    A recent report from the British Nuffield Council on Bioethics associated 'emerging biotechnologies' with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. To address these challenges, leading international institutions stress the need for public involvement activities (PIAs). The objective of this study was to assess the state of PIA reports in the field of biomedical research. PIA reports were identified via a systematic literature search. Thematic text analysis was employed for data extraction. After filtering, 35 public consultation and 11 public participation studies were included in this review. Analysis and synthesis of all 46 PIA studies resulted in 6 distinguishable PIA objectives and 37 corresponding PIA methods. Reports of outcome translation and PIA evaluation were found in 9 and 10 studies respectively (20% and 22%). The paper presents qualitative details. The state of PIAs on biomedical research and innovation is characterized by a broad range of methods and awkward variation in the wording of objectives. Better comparability of PIAs might improve the translation of PIA findings into further policy development. PIA-specific reporting guidelines would help in this regard. The modest level of translation efforts is another pointer to the "deliberation to policy gap". The results of this review could inform the design of new PIAs and future efforts to improve PIA comparability and outcome translation.

  6. Perceived organizational support and job involvement in the Iranian health care system: A case study of emergency room nurses in general hospitals.

    Science.gov (United States)

    Gorji, Hassan Abolghasem; Etemadi, Manal; Hoseini, Fatemeh

    2014-01-01

    Researchers believe that there are social exchanges between the employers and employees, because the employees would be interested in their organization and trust it based on how the organization values them and their welfare, comfort, and security. This belief is known as perceived organizational support that makes employees consider themselves as a part of their organization and have a commitment to it. The literature review is very limited in both variables in Iran and thus few studies also report the perceived organizational support and job involvement at the lower levels in our country. This research aimed at studying the levels of perceived organizational support and job involvement, relationship between this two, and the demographic factors relationship with both of them. This research was a descriptive analytical study conducted in 2012. The population included 123 emergency nurses in General Hospitals of Qom. Data were collected through Perceived Organizational Support and Job Involvement Questionnaires and analyzed using SPSS software, descriptive statistics and Spearman correlation and Chi-square test. Both mean scores for perceived organizational support and job involvement were in average level, 146/12 and 35/38, respectively. There was a significant relationship between perceived organizational support and age, education, tenure, organizational position, and job shift. There was also a significant relationship between job involvement and age and education and finally between perceived organizational support and job involvement (P = 0/029). The high correlation between perceived organizational support and job involvement indicates that the improvement of perceived organizational support are necessary through motivating the employees, showing interest in them, paying attention to them, respecting them, and providing development opportunity in the organization. These should be always considered by managers to improve job involvement.

  7. Methods for Involving Older People in Health Research—A Review of the Literature

    Directory of Open Access Journals (Sweden)

    Imke Schilling

    2017-11-01

    Full Text Available Demographic change has increased the need for research on healthcare for older people. Recently there has been a growing awareness that research might benefit from actively involving patients and the public in study design and conduct. Besides empowering patients and democratizing research, involvement enhances the quality of research and the development of equitable healthcare solutions. Little is known about how to involve older people. This review aims to support scientists intending to involve older people in health research by systematically identifying and describing studies involving older people and analyzing associated facilitators and challenges. Old people were operationalized as people living with old-age-related conditions. We conducted a systematic search in PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature, and Cochrane library for the period 2007 to July 2017 and also manually searched reference lists of the nine retrieved articles and other relevant sources. While involvement of older people in research is feasible, specific challenges related to this group need be taken into account. Strategies to enhance effective involvement comprise a thoughtful choice of location, use of visualization and accessible communication, building good relationships and flexible approaches. Further research is needed on the involvement of people in care homes or with vision, hearing or mobility limitations.

  8. 21 CFR 56.110 - Expedited review procedures for certain kinds of research involving no more than minimal risk...

    Science.gov (United States)

    2010-04-01

    ... 21 Food and Drugs 1 2010-04-01 2010-04-01 false Expedited review procedures for certain kinds of research involving no more than minimal risk, and for minor changes in approved research. 56.110 Section 56.110 Food and Drugs FOOD AND DRUG ADMINISTRATION, DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL...

  9. Examining Understandings of Parent Involvement in Early Childhood Programs

    Science.gov (United States)

    Hilado, Aimee V.; Kallemeyn, Leanne; Phillips, Lauren

    2013-01-01

    The importance of parent involvement in children's development and learning is increasingly recognized in the research literature and in federal and state policies; however, no unified definition of parent involvement exists. This study examined different understandings and definitions of parent involvement in a sample of administrators of…

  10. A rural community's involvement in the design and usability testing of a computer-based informed consent process for the Personalized Medicine Research Project.

    Science.gov (United States)

    Mahnke, Andrea N; Plasek, Joseph M; Hoffman, David G; Partridge, Nathan S; Foth, Wendy S; Waudby, Carol J; Rasmussen, Luke V; McManus, Valerie D; McCarty, Catherine A

    2014-01-01

    Many informed consent studies demonstrate that research subjects poorly retain and understand information in written consent documents. Previous research in multimedia consent is mixed in terms of success for improving participants' understanding, satisfaction, and retention. This failure may be due to a lack of a community-centered design approach to building the interventions. The goal of this study was to gather information from the community to determine the best way to undertake the consent process. Community perceptions regarding different computer-based consenting approaches were evaluated, and a computer-based consent was developed and tested. A second goal was to evaluate whether participants make truly informed decisions to participate in research. Simulations of an informed consent process were videotaped to document the process. Focus groups were conducted to determine community attitudes towards a computer-based informed consent process. Hybrid focus groups were conducted to determine the most acceptable hardware device. Usability testing was conducted on a computer-based consent prototype using a touch-screen kiosk. Based on feedback, a computer-based consent was developed. Representative study participants were able to easily complete the consent, and all were able to correctly answer the comprehension check questions. Community involvement in developing a computer-based consent proved valuable for a population-based genetic study. These findings may translate to other types of informed consents, including those for trials involving treatment of genetic disorders. A computer-based consent may serve to better communicate consistent, clear, accurate, and complete information regarding the risks and benefits of study participation. Additional analysis is necessary to measure the level of comprehension of the check-question answers by larger numbers of participants. The next step will involve contacting participants to measure whether understanding of

  11. Do Research Intermediaries Reduce Perceived Coercion to Enter Research Trials Among Criminally Involved Substance Abusers?

    Science.gov (United States)

    Festinger, David S; Dugosh, Karen L; Croft, Jason R; Arabia, Patricia L; Marlowe, Douglas B

    2011-01-01

    We examined the efficacy of including a research intermediary (RI) during the consent process in reducing participants' perceptions of coercion to enroll in a research study. Eighty-four drug court clients being recruited into an ongoing study were randomized to receive a standard informed consent process alone (standard condition) or with an RI (intermediary condition). Before obtaining consent, RIs met with clients individually to discuss remaining concerns. Findings provided preliminary evidence that RIs reduced client perceptions that their participation might influence how clinical and judicial staff view them. This suggests that using RIs may improve participant autonomy in clinical studies.

  12. Ethical issues in research involving minority populations: the process and outcomes of protocol review by the Ethics Committee of the Faculty of Tropical Medicine, Mahidol University, Thailand

    Science.gov (United States)

    2013-01-01

    Background Recruiting minorities into research studies requires special attention, particularly when studies involve “extra-vulnerable” participants with multiple vulnerabilities, e.g., pregnant women, the fetuses/neonates of ethnic minorities, children in refugee camps, or cross-border migrants. This study retrospectively analyzed submissions to the Ethics Committee of the Faculty of Tropical Medicine (FTM-EC) in Thailand. Issues related to the process and outcomes of proposal review, and the main issues for which clarification/revision were requested on studies, are discussed extensively. Methods The study data were extracted from proposals and amendments submitted to the FTM-EC during the period October 2009 – September 2012, and then analyzed qualitatively and quantitatively. The main issues for clarification/revision were analyzed by thematic content analysis. Results 373 proposals were submitted; 44 studies involved minority groups with 21 extra-vulnerable minorities. All clinical and 2/3 of non-clinical studies submitted for initial review underwent full-board review. For combined clinical and non-clinical study submissions, 92.1% were referred back to the investigators and approved after clarification/revision, while 2.7% were deferred due to major/critical changes, and 2.1% not approved due to substantial violations of ethical principles. The main issues needing clarification/revision differed between all studies and those involving minorities: participant information sheet (62.2% vs. 86.4%), informed consent/assent form (51.2% vs. 86.4%), and research methodology (80.7% vs. 84.1%), respectively. The main ethical issues arising during the meetings, regarding studies involving minorities, included ensuring no exploitation, coercion, or pressure on the minority to participate; methodology not affecting their legal status; considering ethnicity and cultural structure; and providing appropriate compensation. Conclusion Delays in the approval or non

  13. Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions

    Science.gov (United States)

    Lawn, Sharon; Venning, Anthony; Winsall, Megan; Jones, Gabrielle M; Wyld, Kaisha; Damarell, Raechel A; Antezana, Gaston; Schrader, Geoffrey; Smith, David; Collin, Philippa; Bidargaddi, Niranjan

    2015-01-01

    Background Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth. Objective To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth. Methods Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis. Results A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable

  14. Transforming primary healthcare by including the stakeholders involved in delivering care to people living in poverty: EQUIhealThY study protocol.

    Science.gov (United States)

    Loignon, Christine; Hudon, Catherine; Boudreault-Fournier, Alexandrine; Dupéré, Sophie; Macaulay, Ann C; Pluye, Pierre; Gaboury, Isabelle; Haggerty, Jeannie L; Fortin, Martin; Goulet, Émilie; Lambert, Mireille; Pelissier-Simard, Luce; Boyer, Sophie; de Laat, Marianne; Lemire, Francine; Champagne, Louise; Lemieux, Martin

    2013-03-11

    Ensuring access to timely and appropriate primary healthcare for people living in poverty is an issue facing all countries, even those with universal healthcare systems. The transformation of healthcare practices and organization could be improved by involving key stakeholders from the community and the healthcare system in the development of research interventions. The aim of this project is to stimulate changes in healthcare organizations and practices by encouraging collaboration between care teams and people living in poverty. Our objectives are twofold: 1) to identify actions required to promote the adoption of professional practices oriented toward social competence in primary care teams; and 2) to examine factors that would encourage the inclusion of people living in poverty in the process of developing social competence in healthcare organizations. This study will use a participatory action research design applied in healthcare organizations. Participatory research is an increasingly recognized approach that is helpful for involving the people for whom the research results are intended. Our research team consists of 19 non-academic researchers, 11 academic researchers and six partners. A steering committee composed of academic researchers and stakeholders will have a decision-making role at each step, including knowledge dissemination and recommendations for new interventions. In this project we will adopt a multiphase approach and will use a variety of methods, including photovoice, group discussions and interviews. The proposed study will be one of only a few using participatory research in primary care to foster changes aimed at enhancing quality and access to care for people living in poverty. To our knowledge this will be the first study to use photovoice in healthcare organizations to promote new interventions. Our project includes partners who are targeted for practice changes and improvements in delivering primary care to persons living in poverty

  15. A research perspective on stakeholder involvement in radioactive waste management State of the art and future prospects

    International Nuclear Information System (INIS)

    Gaston Meskens; Erik Laes; Gilbert Eggermont

    2006-01-01

    Full text of publication follows: Our modern society is increasingly faced with challenges and problems that cannot be solved by a purely technical, political or social approach. Radioactive waste disposal site selection and management can be characterised as one of these challenges that require a trans-disciplinary approach, integrating social, philosophical and ethical aspects in a 'technical' practice. Along the spirit of this trans-disciplinary approach, and in order to ensure the necessary public support for a policy decision regarding this practice, stakeholder involvement is more and more seen as a necessary policy element in the decision making process. The aim is to achieve the broad involvement of individuals from civil society, with significant representation from local communities, elected representatives and NGO's, as well as scientists from outside radioactive waste management organisations, together with established players in the field, such as the implementers of radioactive waste management, public authorities, experts and waste producers. Several initiatives regarding stakeholder involvement in radioactive waste management have been taken already in Europe, as well in the research era as in 'the real world'. The presentation will give a state of the art by examining some representative examples on both national and European level. The focus will be on the main social, philosophical and ethical aspects of the problem at stake, seen through a trans-disciplinary research lens. The presentation will conclude with some ideas that could inspire as well theoretical researchers as stakeholders-in-the-field. (authors)

  16. A Research Perspective on Stakeholder Involvement in Radioactive Waste Management - State of the Art and Future Prospects

    International Nuclear Information System (INIS)

    Meskens, Gaston; Laes, Erik; Eggermont, Gilbert

    2006-01-01

    Our modern society is increasingly faced with challenges and problems that cannot be solved by a purely technical, political or social approach. Radioactive waste disposal site selection and management can be characterised as one of these challenges that require a transdisciplinary approach, integrating social, philosophical and ethical aspects in a 'technical' practice. Along the spirit of this transdisciplinary approach, and in order to ensure the necessary public support for a policy decision regarding this practice, stakeholder involvement is more and more seen as a necessary policy element in the decision making process. The aim is to achieve the broad involvement of individuals from civil society, with significant representation from local communities, elected representatives and NGO's, as well as scientists from outside radioactive waste management organisations, together with established players in the field, such as the implementers of radioactive waste management, public authorities, experts and waste producers. Several initiatives regarding stakeholder involvement in radioactive waste management have been taken already in Europe, as well in the research era as in 'the real world'. The presentation will give a state of the art by examining some representative examples on both national and European level. The focus will be on the main social, philosophical and ethical aspects of the problem at stake, seen through a transdisciplinary research lens. The presentation will conclude with some ideas that could inspire as well theoretical researchers as stakeholders-in-the-field (Full text of contribution)

  17. Working Memory Involvement in Stuttering: Exploring the Evidence and Research Implications

    Science.gov (United States)

    Bajaj, Amit

    2007-01-01

    Several studies of utterance planning and attention processes in stuttering have raised the prospect of working memory involvement in the disorder. In this paper, potential connections between stuttering and two elements of Baddeley's [Baddeley, A. D. (2003). "Working memory: Looking back and looking forward." "Neuroscience," 4, 829-839] working…

  18. Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.

    Science.gov (United States)

    de Freitas, Cláudia; Dos Reis, Vanessa; Silva, Susana; Videira, Paula A; Morava, Eva; Jaeken, Jaak

    2017-09-26

    Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can foster transformative change toward more responsive services and research. However, attempts to involve lay and professional stakeholders in devising community-framed strategies to address the unmet needs of rare diseases are lacking. In this study, we engaged with the community of Congenital Disorders of Glycosylation (CDG) to assess its needs and elicit social innovations to promote people-centred care and research. Drawing on a qualitative study, we conducted three think tanks in France with a total of 48 participants, including patients/family members (n = 18), health care professionals (n = 7), researchers (n = 7) and people combining several of these roles (n = 16). Participants came from 20 countries across five continents. They were selected from the registry of the Second World Conference on CDG through heterogeneity and simple random sampling. Inductive and deductive approaches were employed to conduct interpretational analysis using open, axial and selective coding, and the constant-comparison method to facilitate the emergence of categories and core themes. The CDG community has unmet needs for information, quality health care, psychosocial support and representation in decision-making concerned with care and research. According to participants, these needs can be addressed through a range of social innovations, including peer-support communities, web-based information resources and a CDG expertise platform. This is one of the few studies to engage lay and professional experts in needs assessment and innovation for CDG at a global level. Implementing the innovations proposed by the CDG community is likely to have ethical, legal and social implications associated with the

  19. Evaluation of a Blog Based Parent Involvement Approach by Parents

    Science.gov (United States)

    Ozcinar, Zehra; Ekizoglu, Nihat

    2013-01-01

    Despite the well-known benefits of parent involvement in children's education, research clearly shows that it is difficult to effectively involve parents. This study aims to capture parents' views of a Blog Based Parent Involvement Approach (BPIA) designed to secure parent involvement in education by strengthening school-parent communication. Data…

  20. The Investigation of Research-Based Home Parental Involvement Practices, Parental Style, and Student Achievement

    Science.gov (United States)

    Colson, Myron Jamal

    2010-01-01

    The purpose of the study was to investigate the relationship of home parental involvement practices, parental style and student achievement. Dimensions of parental involvement practices are parental instruction, parental reinforcement, parental modeling, and parental encouragement. Dimensions of parental style are authoritarian, permissive, and…

  1. Research activity and capacity in primary healthcare: the REACH study: a survey.

    LENUS (Irish Health Repository)

    Glynn, Liam G

    2009-01-01

    BACKGROUND: Despite increased investment in primary care research and development (R&D), the level of engagement of primary healthcare professionals with research remains poor. The aim of this study is to assess the level of research activity and capacity for research among primary healthcare professionals in a health authority of over one million people in a mixed urban\\/rural setting in the West of Ireland. METHODS: A questionnaire, incorporating the R+D Culture Index, was sent to primary healthcare professionals in the HSE Western Region. Baseline characteristics were analysed with the use of one-way ANOVA and Chi-square test and the dependence of R&D Culture Index score on all sixteen available covariates was examined using multiple regression and regression tree modelling. RESULTS: There was a 54% response rate to the questionnaire. Primary healthcare professionals appeared to have an interest in and awareness of the importance of research in primary care but just 15% were found to be research active in this study. A more positive attitude towards an R&D culture was associated with having had previous research training, being currently involved in research and with not being a general practitioner (GP) (p < 0.001), but much variability in the R&D culture index score remained unexplained. CONCLUSION: Despite awareness of the importance of R&D in primary care and investment therein, primary healthcare professionals remain largely unengaged with the R&D process. This study highlights the issues that need to be addressed in order to encourage a shift towards a culture of R&D in primary care: lack of research training particularly in basic research skills and increased opportunities for research involvement. The use of the R&D Culture Index may enable groups to be identified that may be more research interested and can therefore be targeted in any future R&D strategy.

  2. Obstacles to researching the researchers: a case study of the ethical challenges of undertaking methodological research investigating the reporting of randomised controlled trials.

    Science.gov (United States)

    McKenzie, Joanne E; Herbison, G Peter; Roth, Paul; Paul, Charlotte

    2010-03-21

    Recent cohort studies of randomised controlled trials have provided evidence of within-study selective reporting bias; where statistically significant outcomes are more likely to be more completely reported compared to non-significant outcomes. Bias resulting from selective reporting can impact on meta-analyses, influencing the conclusions of systematic reviews, and in turn, evidence based clinical practice guidelines.In 2006 we received funding to investigate if there was evidence of within-study selective reporting in a cohort of RCTs submitted to New Zealand Regional Ethics Committees in 1998/99. This research involved accessing ethics applications, their amendments and annual reports, and comparing these with corresponding publications. We did not plan to obtain informed consent from trialists to view their ethics applications for practical and scientific reasons. In November 2006 we sought ethical approval to undertake the research from our institutional ethics committee. The Committee declined our application on the grounds that we were not obtaining informed consent from the trialists to view their ethics application. This initiated a seventeen month process to obtain ethical approval. This publication outlines what we planned to do, the issues we encountered, discusses the legal and ethical issues, and presents some potential solutions. Methodological research such as this has the potential for public benefit and there is little or no harm for the participants (trialists) in undertaking it. Further, in New Zealand, there is freedom of information legislation, which in this circumstance, unambiguously provided rights of access and use of the information in the ethics applications. The decision of our institutional ethics committee defeated this right and did not recognise the nature of this observational research. Methodological research, such as this, can be used to develop processes to improve quality in research reporting. Recognition of the potential

  3. [Relations between research and clinical care in co-management studies with mental health care users].

    Science.gov (United States)

    Palombini, Analice de Lima; Onocko-Campos, Rosana Teresa; Silveira, Marília; Gonçalves, Laura Lamas Martins; Zanchet, Lívia; Xavier, Maria Angélica Zamora; de Castro e Marques, Cecília

    2013-10-01

    This paper is derived from the experience of conducting research with mental health users (not about them, nor for them), analyzing aspects of a study in which different ways of structuring the relationship between clinical practice and research were put into play, thereby questioning the boundaries and ethical issues involved. The clinical practice and research fields that are dealt with are studied with the input of authors who, on the basis of institutional analysis, propose the idea of interventional research, and in the context of public health, revert to the concept of broadened clinical care. The relationship between these two terms - interventional research and broadened clinical care - is based on the notion of subjectivity that operates within the scope of public health and which culminates in the concept of autonomy. Lastly, co-management is proposed as a strategy based on which the different actors involved in conducting research and exercising clinical care can collectively build working principles that are both therapeutic and ethical.

  4. Case studies within a mixed methods paradigm: toward a resolution of the alienation between researcher and practitioner in psychotherapy research.

    Science.gov (United States)

    Dattilio, Frank M; Edwards, David J A; Fishman, Daniel B

    2010-12-01

    This article addresses the long-standing divide between researchers and practitioners in the field of psychotherapy, regarding what really works in treatment and the extent to which interventions should be governed by outcomes generated in a "laboratory atmosphere." This alienation has its roots in a positivist paradigm, which is epistemologically incomplete because it fails to provide for context-based practical knowledge. In other fields of evaluation research, it has been superseded by a mixed methods paradigm, which embraces pragmatism and multiplicity. On the basis of this paradigm, we propose and illustrate new scientific standards for research on the evaluation of psychotherapeutic treatments. These include the requirement that projects should comprise several parallel studies that involve randomized controlled trials, qualitative examinations of the implementation of treatment programs, and systematic case studies. The uniqueness of this article is that it contributes a guideline for involving a set of complementary publications, including a review that offers an overall synthesis of the findings from different methodological approaches. (PsycINFO Database Record (c) 2010 APA, all rights reserved).

  5. 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.

  6. "Do-It-Ourselves Science": Case Studies of Volunteer-Initiated Citizen Science Involvement

    Science.gov (United States)

    Raddick, Jordan; Bracey, G.; Gay, P. L.

    2009-05-01

    Galaxy Zoo is a citizen science website in which members of the public volunteer to classify galaxies, thereby helping astronomers conduct publishable research into galaxy morphologies and environments. Although the site was originally created to answer a few specific questions, some members of the community - both scientists and volunteers - have spontaneously developed an interest in a wider variety of questions. Volunteers have pursued answers to these questions with guidance from professional astronomers; in completing these projects, volunteers have independently used some of the same data viewing and analysis tools that professional astronomers use, and have even developed their own online tools. They have created their own research questions and their own plans for data analysis, and are planning to write scientific papers with the results to be submitted to peer-reviewed scientific journals. Volunteers have identified a number of such projects. These volunteer-initiated projects have extended the scientific reach of Galaxy Zoo, while also giving volunteers first-hand experience with the process of science. We are interested in the process by which volunteers become interested in volunteer-initiated projects, and what tasks they participate in, both initially and as their involvement increases. What motivates a volunteer to become involved in a volunteer-initiated project? How does his or her motivation change with further involvement? We are conducting a program of qualitative education research into these questions, using as data sources the posts that volunteers have made to the Galaxy Zoo forum and transcripts of interviews with volunteers.

  7. Analysis of brand personality to involve event involvement and loyalty: A case study of Jakarta Fashion Week 2017

    Science.gov (United States)

    Nasution, A. H.; Rachmawan, Y. A.

    2018-04-01

    Fashion trend in the world changed extremely fast. Fashion has become the one of people’s lifestyle in the world. Fashion week events in several areas can be a measurement of fahion trend nowadays. There was a fashion week event in Indonesia called Jakarta Fashion Week (JFW) aims to show fashion trend to people who want to improve their fashion style. People will join some events if the event has involvement to them, hence they will come to that event again and again. Annually and continuously event is really important to create loyalty among people who are involved in it, in order to increase positive development towards the organizer in organizing the next event. Saving a huge amount from the marketing budget, and creating a higher quality event. This study aims to know the effect of 5 brand personality dimension to event involvement and loyalty in Jakarta Fashion Week (JFW). This study use quantitative confirmative method with Structural Equation Model (SEM) analysis technique. The sample of this study is 150 respondents who became a participant of Jakarta Fashion Week 2017. Result show that there was significant effect of 5 brand personality dimension to 3 dimension of event involvement and loyalty. Meanwhile, there was one dimension of event involvement called personal self-expression that has not effect to loyalty.

  8. Involving healthcare professionals and family carers in setting research priorities for end-of-life care.

    Science.gov (United States)

    Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn

    2017-02-02

    It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.

  9. Personal involvement is related to increased search motivation and associated with activity in left BA44-a pilot study.

    Science.gov (United States)

    Schaefer, Michael; Rumpel, Franziska; Sadrieh, Abdolkarim; Reimann, Martin; Denke, Claudia

    2015-01-01

    Numerous studies explore consumer perception of brands in a more or less passive way. This may still be representative for many situations or decisions we make each day. Nevertheless, sometimes we often actively search for and use information to make informed and reasoned choices, thus implying a rational and thinking consumer. Researchers suggested describing this distinction as low relative to high involvement consumer behavior. Although the involvement concept has been widely used to explain consumer behavior, behavioral and neural correlates of this concept are poorly understood. The current study aims to describe a behavioral measure that is associated with high involvement, the length of search behavior. A second aim of this study was to explore brain activations associated with involvement by employing functional magnetic resonance imaging (fMRI). We presented participants information cues for different products and told them that they had to answer questions with respect to these products at the end of the experiment. Participants were free to stop the information search if they think they gathered enough information or to continue with collecting information. Behavioral results confirmed our hypothesis of a relationship between searching behavior and personal involvement by demonstrating that the length of search correlated significantly with the degree of personal involvement of the participants. fMRI data revealed that personal involvement was associated with activation in BA44. Since this brain region is known to be involved in semantic memory, the results of this pilot study suggest that high involvement consumer behavior may be linked to cognitive load and attention towards a product.

  10. Personal involvement is related to increased search motivation and associated with activity in left BA44 - a pilot study

    Directory of Open Access Journals (Sweden)

    Michael eSchaefer

    2015-03-01

    Full Text Available Numerous studies explore consumer perception of brands in a more or less passive way. This may still be representative for many situations or decisions we make each day. Nevertheless, sometimes we often actively search for and use information to make informed and reasoned choices, thus implying a rational and thinking consumer. Researchers suggested describing this distinction as low relative to high involvement consumer behavior. Although the involvement concept has been widely used to explain consumer behavior, behavioral and neural correlates of this concept are poorly understood. The current study aims to describe a behavioral measure that is associated with high involvement, the length of search behavior. A second aim of this study was to explore brain activations associated with involvement by employing functional magnetic resonance imaging (fMRI. We presented participants information cues for different products and told them that they had to answer questions with respect to these products at the end of the experiment. Participants were free to stop the information search if they think they gathered enough information or to continue with collecting information. Behavioral results confirmed our hypothesis of a relationship between searching behavior and personal involvement by demonstrating that the length of search correlated significantly with the degree of personal involvement of the participants. FMRI data revealed that personal involvement was associated with activation in BA44. Since this brain region is known to be involved in semantic memory, the results of this pilot study suggest that high involvement consumer behavior may be linked to cognitive load and attention towards a product.

  11. Literature search and review of research involving radioisotopes conducted by Dr. G.E. Burch at Charity Hospital in New Orleans, Louisiana under the auspices of Tulane University during the 1940s,1950s, and 1960s

    International Nuclear Information System (INIS)

    Brooks, F.; Curtis, E.C.; Forrester, G.; Roth, V.; Spickard, J.; Webster, B.; Engle, J.; Perkins, L.; Powell, S.

    1994-01-01

    This report presents a synopsis of research performed by Dr. G.E. Burch during the 1940s, 1950s, and 1960s at Charity Hospital in New Orleans, Louisiana. Four technical experts have reviewed twenty-seven research published in peer-reviewed research journals and proceedings by Dr. Burch and his colleagues between the years 1946 and 1968. The papers were grouped prior to the review into three categories represented in this report by the following chapter titles: Studies Involving Human Subjects; Isotopic Studies Not Involving Human or Canine Subjects; and Studies Involving Dogs as Test Models. The experts' reviews addressed five areas. What, if Any, Is the Scientific Value of the Research on Which These Studies Are Based?; Did the Research Provide Medicine with New and Useful Information?; What Contributions Did This Research Make to Patient Care or to the Understanding of the Disease Process?; What Was Known Medically about Matters Addressed by This Research at the Time It Was Being Conducted? and Is There Documentation That Shows Informed Consent?

  12. Ethical and methodological issues in qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions: a critical review.

    Science.gov (United States)

    Carlsson, Ing-Marie; Blomqvist, Marjut; Jormfeldt, Henrika

    2017-01-01

    Undertaking research studies in the field of mental health is essential in mental health nursing. Qualitative research methodologies enable human experiences to become visible and recognize the importance of lived experiences. This paper argues that involving people with schizophrenia in research is critical to promote their health and well-being. The quality of qualitative research needs scrutinizing according to methodological issues such as trustworthiness and ethical standards that are a fundamental part of qualitative research and nursing curricula. The aim of this study was to critically review recent qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions, regarding descriptions of ethical and methodological issues in data collection and analysis. A search for relevant papers was conducted in three electronic databases, in December 2016. Fifteen qualitative interview studies were included and reviewed regarding methodological issues related to ethics, and data collection and analysis. The results revealed insufficient descriptions of methodology regarding ethical considerations and issues related to recruitment and sampling in qualitative interview studies with individuals with severe mental illness, putting trustworthiness at risk despite detailed descriptions of data analysis. Knowledge from the perspective of individuals with their own experience of mental illness is essential. Issues regarding sampling and trustworthiness in qualitative studies involving people with severe mental illness are vital to counteract the stigmatization of mental illness.

  13. Copyright Law in Australia--Fair Dealing for Research or Study Purposes.

    Science.gov (United States)

    Khan, Anwar (Andy); Hancock, Philip

    2001-01-01

    Explores several issues involving provisions of the Australian copyright law that allow for "fair dealing for the purpose of research and study" in the use of copyrighted materials. Discusses liability of libraries for improper oversight of illegal photocopying of books and other copyrighted materials. Reviews recent efforts to improve…

  14. Consumer involvement in the health technology assessment program.

    Science.gov (United States)

    Royle, Jane; Oliver, Sandy

    2004-01-01

    This study aims to describe a cycle of development leading to sustainable methods for involving consumers in the management of a program commissioning health technology assessment. Staff time was dedicated to developing procedures for recruiting and briefing consumers to participate in prioritizing, commissioning, and reporting research. Resources and support were developed in light of early feedback from consumers and those working with them. These were piloted and amended before being used routinely. Over 4 years, procedures and resources have been developed to support six consumers attending seven to eight prioritization meetings a year; thirty to forty-five consumers each year commenting on research need for particular topics; thirty consumers a year commenting on research proposals, and twenty a year commenting on research reports. The procedures include clear job descriptions, induction and development days, clear briefing materials, payment for substantial tasks, and regularly seeking feedback to improve procedures. Explicit, inclusive, and reproducible methods for supporting consumer involvement that satisfy National Health Service policy recommendations for involving consumers in research require dedicated staff time to support a cycle of organizational development.

  15. Analyzing Parental Involvement Dimensions in Early Childhood Education

    Science.gov (United States)

    Kurtulmus, Zeynep

    2016-01-01

    The importance of parental involvement in children's academic and social development has been widely accepted. For children's later school success, the first years are crucial. Majority of the research focuses on enhancing and supporting parental involvement in educational settings. The purpose of this study was to analyze dimensions of parental…

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

    Science.gov (United States)

    MacNeill, Virginia; Foley, Marian; Quirk, Alan; McCambridge, Jim

    2016-01-29

    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 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. 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. These participants described no dramatic impacts attributable to taking part in

  17. Heterogeneity of Human Research Ethics Committees and Research Governance Offices across Australia: An observational study.

    Science.gov (United States)

    De Smit, Elisabeth; Kearns, Lisa S; Clarke, Linda; Dick, Jonathan; Hill, Catherine L; Hewitt, Alex W

    2016-01-01

    Conducting ethically grounded research is a fundamental facet of all investigations. Nevertheless, the administrative burdens of current ethics review are substantial, and calls have been made for a reduction in research waste. To describe the heterogeneity in administration and documentation required by Human Research Ethics Committees (HRECs) and Research Governance Offices (RGOs) across Australia. In establishing a nationwide study to investigate the molecular aetiology of Giant Cell Arteritis (GCA), for which archived pathological specimens from around Australia are being recruited, we identified variation across separate HREC and RGO requirements. Submission paperwork and correspondence from each collaborating site and its representative office for research were reviewed. This data was interrogated to evaluate differences in current guidelines. Twenty-five pathology departments across seven Australian States collaborated in this study. All states, except Victoria, employed a single ethics review model. There was discrepancy amongst HRECs as to which application process applied to our study: seven requested completion of a "National Ethics Application Form" and three a "Low Negligible Risk" form. Noticeable differences in guidelines included whether electronic submission was sufficient. There was variability in the total number of documents submitted (range five to 22) and panel review turnaround time (range nine to 136 days). We demonstrate the challenges and illustrate the heavy workload involved in receiving widespread ethics and governance approval across Australia. We highlight the need to simplify, homogenise, and nationalise human ethics for non-clinical trial studies. Reducing unnecessary administration will enable investigators to achieve research aims more efficiently.

  18. Heterogeneity of Human Research Ethics Committees and Research Governance Offices across Australia: An observational study

    Directory of Open Access Journals (Sweden)

    Elisabeth De Smit

    2016-02-01

    Full Text Available Background Conducting ethically grounded research is a fundamental facet of all investigations. Nevertheless, the administrative burdens of current ethics review are substantial, and calls have been made for a reduction in research waste. Aims To describe the heterogeneity in administration and documentation required by Human Research Ethics Committees (HRECs and Research Governance Offices (RGOs across Australia. Methods In establishing a nationwide study to investigate the molecular aetiology of Giant Cell Arteritis (GCA, for which archived pathological specimens from around Australia are being recruited, we identified variation across separate HREC and RGO requirements. Submission paperwork and correspondence from each collaborating site and its representative office for research were reviewed. This data was interrogated to evaluate differences in current guidelines. Results Twenty-five pathology departments across seven Australian States collaborated in this study. All states, except Victoria, employed a single ethics review model. There was discrepancy amongst HRECs as to which application process applied to our study: seven requested completion of a “National Ethics Application Form” and three a “Low Negligible Risk” form. Noticeable differences in guidelines included whether electronic submission was sufficient. There was variability in the total number of documents submitted (range five to 22 and panel review turnaround time (range nine to 136 days. Conclusion We demonstrate the challenges and illustrate the heavy workload involved in receiving widespread ethics and governance approval across Australia. We highlight the need to simplify, homogenise, and nationalise human ethics for non-clinical trial studies. Reducing unnecessary administration will enable investigators to achieve research aims more efficiently

  19. Cross sectional study of young people's awareness of and involvement with tobacco marketing.

    Science.gov (United States)

    MacFadyen, L; Hastings, G; MacKintosh, A M

    2001-03-03

    To examine young people's awareness of and involvement with tobacco marketing and to determine the association, if any, between this and their smoking behaviour. Cross sectional, quantitative survey, part interview and part self completion, administered in respondents' homes. North east England. Stratified random sample of 629 young people aged 15 and 16 years who had "opted in" to research through a postal consent procedure. There was a high level of awareness of and involvement in tobacco marketing among the 15-16 year olds sampled in the study: around 95% were aware of advertising and all were aware of some method of point of sale marketing. Awareness of and involvement with tobacco marketing were both significantly associated with being a smoker: for example, 30% (55/185) of smokers had received free gifts through coupons in cigarette packs, compared with 11% (21/199) of non-smokers (Pawareness of coupon schemes, brand stretching, and tobacco marketing in general were all independently associated with current smoking status. Teenagers are aware of, and are participating in, many forms of tobacco marketing, and both awareness and participation are associated with current smoking status. This suggests that the current voluntary regulations designed to protect young people from smoking are not working, and that statutory regulations are required.

  20. Researches in agri-food supply chain: A bibliometric study

    Science.gov (United States)

    Hisjam, Muhammad; Sutopo, Wahyudi

    2017-11-01

    Agri-food is very important for human being. Problems in managing agri-food are very complicated. There are many entities involved in managing agri-food with conflict of interest between them makes the problems become more complicated. Using supply chain approaches in agri-food will help solving the problems. The purpose of this paper is to show that the publications in agri-food supply chain research area are still promising and to show the research trend in agri-food supply chain. The study was a bibliometric study by using some queries on the website with the largest database of peer-reviewed literature. The queries were using various categories and refinements. Firstly the study was exploring all publications in this research area in some categories and then divided the duration into 2 intervals. The last query was to know how many publications are review type publications. The results show that the number of the publications with agri-food supply chain topics are still limited, and tend to increase. It means researches in this area are still promising. The results also show the most publications are from which source title, country, and affiliation. The results also show the research trend in this research area. The quantities of review type publications in agri-food supply chain are still few. It shows the need for more review type publications in this area.

  1. 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.

  2. Involving children and young people in clinical research through the forum of a European Young Persons' Advisory Group: needs and challenges.

    Science.gov (United States)

    Gaillard, Segolene; Malik, Salma; Preston, Jenny; Escalera, Begonya Nafria; Dicks, Pamela; Touil, Nathalie; Mardirossian, Sandrine; Claverol-Torres, Joana; Kassaï, Behrouz

    2018-02-19

    Children and young people are seen as fundamental to the design and delivery of clinical research as active and reflective participants. In Europe, involvement of children and young people in clinical research is promoted extensively in order to engage young people in research as partners and to give them a voice to raise their own issues or opinions and for their involvement in planning and decision making in addition to learning research skills. Children and young people can be trained in clinical research through participation in young person advisory groups (YPAGs). Members of YPAGs assist other children and young people to learn about clinical research and share their experience and point of view with researchers, thereby possibly influencing all phases of research including the development and prioritization of research questions, design and methods, recruitment plans, and strategies for results dissemination. In the long term, the expansion of YPAGs in Europe will serve as a driving force for refining pediatric clinical research. It will help in a better definition of research projects according to the patients' needs. Furthermore, direct engagement of children and young people in research will be favorable to both researchers and young people. © 2018 Société Française de Pharmacologie et de Thérapeutique.

  3. Involving burn survivors in agenda setting on burn research: an added value?

    NARCIS (Netherlands)

    Broerse, J.E.W.; Zweekhorst, M.B.M.; Van Rensen, A.J.M.L.; De Haan, M.J.M.

    2010-01-01

    Background and aim: The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists. In this article we compare the research

  4. The Case Study as Research Heuristic: Lessons from the R&D Value Mapping Project.

    Science.gov (United States)

    Bozeman, Barry; Klein, Hans K.

    1999-01-01

    Examines the role of prototype case studies as the foundation for later evaluation through two studies from the "R&D Value Mapping Project," a study that will involve more than 30 cases. Explores the usefulness of case studies in defining and assessing subsequent research efforts. (SLD)

  5. Effects of top management involvement in integrated marketing communications

    Directory of Open Access Journals (Sweden)

    Nina Hočevar

    2007-12-01

    Full Text Available There is scarce empirical evidence in the academic literature of how top management involvement influences the degree of integrated marketing communications. At the same time, some authors believe that this relationship should be explored more extensively.In this paper we present one possible approach to investigating the relationship between top management involvement and the degree of integrated marketing communications. Our research established that a greater involvement of top management in marketing communications could be associated with a higher degree of IMC. Investigating the relationship between management and IMC is indeed at a very early stage. We suggest that this study has provided a basis for future research on the relationship between top management involvement in marketing communications and the degree of IMC.

  6. Caregiver Involvement in the Education of Youth in Foster Care: An Exploratory Study

    Science.gov (United States)

    Beisse, Kay; Tyre, Ashli

    2013-01-01

    This study was an exploratory investigation of caregiver involvement in the education of youth in foster care. In this study, foster caregivers reported that they are involved in the education of children in their care and participate in at-home involvement activities more often than at-school involvement activities. Caregivers in this study…

  7. Nerve and muscle involvement in mitochondrial disorders: an electrophysiological study.

    Science.gov (United States)

    Mancuso, Michelangelo; Piazza, Selina; Volpi, Leda; Orsucci, Daniele; Calsolaro, Valeria; Caldarazzo Ienco, Elena; Carlesi, Cecilia; Rocchi, Anna; Petrozzi, Lucia; Calabrese, Rosanna; Siciliano, Gabriele

    2012-04-01

    Involvement of the peripheral nervous system in mitochondrial disorders (MD) has been previously reported. However, the exact prevalence of peripheral neuropathy and/or myopathy in MD is still unclear. In order to evaluate the prevalence of neuropathy and myopathy in MD, we performed sensory and motor nerve conduction studies (NCS) and concentric needle electromyography (EMG) in 44 unselected MD patients. NCS were abnormal in 36.4% of cases, and were consistent with a sensori-motor axonal multineuropathy (multifocal neuropathy), mainly affecting the lower limbs. EMG evidence of myopathy was present in 54.5% of patients, again mainly affecting the lower limbs. Nerve and muscle involvement was frequently subclinical. Peripheral nerve and muscle involvement is common in MD patients. Our study supports the variability of the clinical expression of MD. Further studies are needed to better understand the molecular basis underlying the phenotypic variability among MD patients.

  8. Researcher Positioning

    DEFF Research Database (Denmark)

    Khawaja, Iram; Mørck, Line Lerche

    2009-01-01

    involvement by the researcher, which challenges traditional perspectives onresearch and researcher positioning. A key point in this regard is the importance ofconstant awareness of and reflection on the multiple ways in which one's positioningas a researcher influences the research process. Studying the other...

  9. The Synergies research-practice partnership project: a 2020 Vision case study

    Science.gov (United States)

    Falk, John H.; Dierking, Lynn D.; Staus, Nancy L.; Wyld, Jennifer N.; Bailey, Deborah L.; Penuel, William R.

    2016-03-01

    This paper, describes Synergies, an on-going longitudinal study and design effort, being conducted in a diverse, under-resourced community in Portland, Oregon, with the goal of measurably improving STEM learning, interest and participation by early adolescents, both in school and out of school. Authors examine how the work of this particular research-practice partnership is attempting to accommodate the six principles outlined in this issue: (1) to more accurately reflect learning as a lifelong process occurring across settings, situations and time frames; (2) to consider what STEM content is worth learning; (3) to examine learning as a cultural process, involving varied repertoires of practice across learners' everyday lives; (4) to directly involve practitioners (and learners) in the research process; (5) to document how existing and emerging technologies and new media are, and will continue, to shape and redefine the content and practice of STEM learning research; and, (6) to take into account the broader socio-cultural-political contexts of the needs and concerns of the larger global society.

  10. Patient Involvement in Patient Safety: A Qualitative Study of Nursing Staff and Patient Perceptions.

    Science.gov (United States)

    Bishop, Andrea C; Macdonald, Marilyn

    2017-06-01

    The risk associated with receiving health care has called for an increased focus on the role of patients in helping to improve safety. Recent research has highlighted that patient involvement in patient safety practices may be influenced by patient perceptions of patient safety practices and the perceptions of their health care providers. The objective of this research was to describe patient involvement in patient safety practices by exploring patient and nursing staff perceptions of safety. Qualitative focus groups were conducted with a convenience sample of nursing staff and patients who had previously completed a patient safety survey in 2 tertiary hospital sites in Eastern Canada. Six focus groups (June 2011 to January 2012) were conducted and analyzed using inductive thematic analysis. Four themes were identified: (1) wanting control, (2) feeling connected, (3) encountering roadblocks, and (4) sharing responsibility for safety. Both patient and nursing staff participants highlighted the importance of building a personal connection as a precursor to ensuring that patients are involved in their care and safety. However, perceptions of provider stress and nursing staff workload often reduced the ability of the nursing staff and patient participants to connect with one another and promote involvement. Current strategies aimed at increasing patient awareness of patient safety may not be enough. The findings suggest that providing the context for interaction to occur between nursing staff and patients as well as targeted interventions aimed at increasing patient control may be needed to ensure patient involvement in patient safety.

  11. Personal involvement is related to increased search motivation and associated with activity in left BA44—a pilot study

    Science.gov (United States)

    Schaefer, Michael; Rumpel, Franziska; Sadrieh, Abdolkarim; Reimann, Martin; Denke, Claudia

    2015-01-01

    Numerous studies explore consumer perception of brands in a more or less passive way. This may still be representative for many situations or decisions we make each day. Nevertheless, sometimes we often actively search for and use information to make informed and reasoned choices, thus implying a rational and thinking consumer. Researchers suggested describing this distinction as low relative to high involvement consumer behavior. Although the involvement concept has been widely used to explain consumer behavior, behavioral and neural correlates of this concept are poorly understood. The current study aims to describe a behavioral measure that is associated with high involvement, the length of search behavior. A second aim of this study was to explore brain activations associated with involvement by employing functional magnetic resonance imaging (fMRI). We presented participants information cues for different products and told them that they had to answer questions with respect to these products at the end of the experiment. Participants were free to stop the information search if they think they gathered enough information or to continue with collecting information. Behavioral results confirmed our hypothesis of a relationship between searching behavior and personal involvement by demonstrating that the length of search correlated significantly with the degree of personal involvement of the participants. fMRI data revealed that personal involvement was associated with activation in BA44. Since this brain region is known to be involved in semantic memory, the results of this pilot study suggest that high involvement consumer behavior may be linked to cognitive load and attention towards a product. PMID:25859200

  12. Does organisational commitment enhance the relationship between job involvement and in-role performance?

    Directory of Open Access Journals (Sweden)

    Talat Islam

    2012-11-01

    Full Text Available Orientation: Job involvement is essential for the performance of employees. Prior researchers have found a weak relationship between job involvement and job performance, but dimensions of commitment have been considered as a mediator to enhance the relationship.Research purpose: This research is aimed at discovering the role of organisational commitment as a mediating variable between the relationship of job involvement and performance.Motivation for the study: The aim of organisations today is to outperform each other in every respect. In order to realise this, the role of employees is crucial. To elicit the best from employees requires much attention from organisations. This research is focused on this specific issue, namely, increasing employees’ performance.Research design, approach and method: The researchers have used structured questionnaires using the quantitative approach. A similar research methodology using the survey method was applied by the researchers to make the results comparable. The simple random sampling technique was used. Data was evaluated on the basis of 208 completed questionnaires.Main findings: Findings of the study indicate that there is a relationship between job involvement and in-role performance. Affective and normative commitment can act as mediator. However, continuance commitment is not a mediator in this relationship.Practical/managerial implications: It is important for organisations that want to gain a competitive edge over its rivals to enhance the level of involvement of its employees.Contribution/value-add: The results of this study will provide a new dimension for managers on how to gain a competitive advantage over rival firms with regard to performance by increasing the level of job involvement.

  13. Expanding the Reach of Physics-Engaging Students in Interdisciplinary Research Involving complex, real-world situation

    Science.gov (United States)

    Bililign, Solomon

    2014-03-01

    Physics plays a very important role in most interdisciplinary efforts and can provide a solid foundation for students. Retention of students in STEM areas can be facilitated by enhanced interdisciplinary education and research since students are strongly attracted to research with societal relevance and show increasing enthusiasm about problems that have practical consequences. One such area of research is a collaborative Earth System Science. The Earth System is dynamic and complex. It is comprised of diverse components that interact. By providing students the opportunities to work in interdisciplinary groups on a problem that reflects a complex, real-world situation they can see the linkages between components of the Earth system that encompass climate and all its components (weather precipitation, temperature, etc.) and technology development and deployment of sensors and sensor networks and social impacts. By involving students in the creation of their own personalized professional development plan, students are more focused and engaged and are more likely to remain in the program.

  14. A Qualitative Study into Dependent Relationships and Voluntary Informed Consent for Research in Pediatric Oncology.

    Science.gov (United States)

    Dekking, Sara A S; van der Graaf, Rieke; Schouten-van Meeteren, Antoinette Y N; Kars, Marijke C; van Delden, Johannes J M

    2016-04-01

    In pediatric oncology, many oncologists invite their own patients to participate in research. Inclusion within a dependent relationship is considered to potentially compromise voluntariness of consent. Currently, it is unknown to what extent those involved in pediatric oncology experience the dependent relationship as a threat to voluntary informed consent, and what they see as safeguards to protect voluntary informed consent within a dependent relationship. We performed a qualitative study among key actors in pediatric oncology to explore their experiences with the dependent relationship and voluntary informed consent. We conducted three focus groups and 25 semi-structured, in-depth interviews with pediatric oncologists, research coordinators, Research Ethics Committee members, parents of children with cancer, and adolescents with cancer. Professionals regarded the dependent relationship both as a potential threat to and as a positive influence on voluntary decision making. Parents and adolescents did not feel as though dependency upon the oncologist influenced their decisions. They valued the involvement of their own physician in the informed consent process. The professionals suggested three strategies to protect voluntariness: emphasizing voluntariness; empowering families; involvement of an independent person. Although the dependent relationship between pediatric oncologists, patients and parents may be problematic for voluntary informed consent, this is not necessarily the case. Moreover, the involvement of treating physicians may even have a positive impact on the informed consent process. Although we studied pediatric oncology, our results may also apply to many other fields of pediatric medicine where research and care are combined, for example, pediatric rheumatology, neurology and nephrology. Clinical trials in these fields are inevitably often designed, initiated and conducted by medical specialists closely involved in patient care.

  15. Who and What Does Involvement Involve?

    DEFF Research Database (Denmark)

    Hansen, Jeppe Oute; Petersen, Anders; Huniche, Lotte

    2015-01-01

    This article gives an account of aspects of a multi-sited field study of involvement of relatives in Danish psychiatry. By following metaphors of involvement across three sites of the psychiatric systema family site, a clinical site and a policy sitethe first author (J.O.) investigated how...... theoretical perspective laid out by Ernesto Laclau and Chantal Mouffe, the aim of this study is to show how the dominant discourse about involvement at the political and clinical sites is constituted by understandings of mentally ill individuals and by political objectives of involvement. The analysis...... the responsibility toward the mental health of the ill individual as well as toward the psychological milieu of the family....

  16. Online social networks for patient involvement and recruitment in clinical research.

    Science.gov (United States)

    Ryan, Gemma Sinead

    2013-01-01

    To review current literature and discuss the potential of online social networking to engage patients and the public and recruit and retain participants in clinical research. Online social networking is becoming a large influence on people's daily lives. Clinical research faces several challenges, with an increasing need to engage with patients and the public and for studies to recruit and retain increasing numbers of participants, particularly in under-served, under-represented and hard to reach groups and communities. Searches were conducted using EMBASE, BNI, ERIC, CINAHL, PSYCHinfo online databases and Google Scholar to identify any grey or unpublished literature that may be available. Review methods This is a methodology paper. Online social networking is a successful, cost-effective and efficient method by which to target and recruit a wide range of communities, adolescents, young people and underserved populations into quantitative and qualitative research. Retention of participants in longitudinal studies could be improved using social networks such as Facebook. Evidence indicates that a mixed approach to recruitment using social networking and traditional methods is most effective. Further research is required to strengthen the evidence available, especially in dissemination of research through online social networks. Researchers should consider using online social networking as a method of engaging the public, and also for the recruitment and follow up of participants.

  17. INVOLVING STUDENTS IN RESEARCH AS A FORM OF INTEGRATION OF ENGINEERING WITH MATHEMATICAL EDUCATION

    Directory of Open Access Journals (Sweden)

    Viktor M. Fedoseyev

    2016-03-01

    Full Text Available Introduction: questions of integration of mathematical with engineering training in educational process of higher education institution are explored. The existing technologies of the integrated training are analyzed, and the project-oriented direction is distinguished. Research involving students as an organisational and methodical form of training bachelors of the technical speciali sations is discussed. Materials and Methods: results of article are based on researches of tendencies of development of technical and mathematical education, works on the theory and methodology of pedagogical integration, methodology of mathematics and technical science. Methods of historical and pedagogical research, analytical, a method of mathematical modeling were used. Results: the main content of the paper is to make discussion of experience in developing and using integrated educational tasks in real educational process. Discussion is based on a specific technological assignment including a number of mathematical tasks used as a subject of research for students. In the assignment a special place is allocated to the questions reflecting the interplay of a technical task with a mathematical method of research highlighting the objective significance of mathematics as a method to solve engineering problems. Discussion and Conclusions: the paper gives reasons to conditions for using research work with students as an organisational and methodical form of integrated training in mathematics. In realisation of educational technology it is logical to apply the method of projects. It is necessary to formulate a task as an engineering project: to set an engineering objective of research, to formulate specifications; to differentiate between engineering and mathematical tasks of the project, to make actual interrelations between them; the mathematical part of the project has to be a body of research; assessment of the project must be carried out not only accounting for

  18. Children's views on research without prior consent in emergency situations: a UK qualitative study.

    Science.gov (United States)

    Roper, Louise; Sherratt, Frances C; Young, Bridget; McNamara, Paul; Dawson, Angus; Appleton, Richard; Crawley, Esther; Frith, Lucy; Gamble, Carrol; Woolfall, Kerry

    2018-06-09

    We explored children's views on research without prior consent (RWPC) and sought to identify ways of involving children in research discussions. Qualitative interview study. Participants were recruited through a UK children's hospital and online advertising. 16 children aged 7-15 years with a diagnosis of asthma (n=14) or anaphylaxis (n=2) with recent (<12 months) experience of emergency care. Children were keen to be included in medical research and viewed RWPC as acceptable in emergency situations if trial interventions were judged safe. Children trusted that doctors would know about their trial participation and act in their best interests. All felt that children should be informed about the research following their recovery and involved in discussions with a clinician or their parent(s) about the use of data already collected as well as continued participation in the trial (if applicable). Participants suggested methods to inform children about their trial participation including an animation. Children supported, and were keen to be involved in, clinical trials in emergency situations. We present guidance and an animation that practitioners and parents might use to involve children in trial discussions following their recovery. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  19. Consumer-Involved Participatory Research to Address General Medical Health and Wellness in a Community Mental Health Setting.

    Science.gov (United States)

    Iyer, Sharat P; Pancake, Laura S; Dandino, Elizabeth S; Wells, Kenneth B

    2015-12-01

    Barriers to sustainably implementing general medical interventions in community mental health (CMH) settings include role uncertainty, consumer engagement, workforce limitations, and sustainable reimbursement. To address these barriers, this project used a community-partnered participatory research framework to create a stakeholder-based general medical and wellness intervention in a large CMH organization, with consumers involved in all decision-making processes. Consumers faced practical barriers to participating in organizational decision making, but their narratives were critical in establishing priorities and ensuring sustainability. Addressing baseline knowledge and readiness of stakeholders and functional challenges to consumer involvement can aid stakeholder-based approaches to implementing general medical interventions in CMH settings.

  20. Study and Research Paths at Upper Secondary Mathematics Education

    DEFF Research Database (Denmark)

    Jessen, Britta Eyrich

    the scope of teaching at this level. With respect to mathematical modelling, links and gaps were identified between scholarly knowledge and knowledge to be taught in secondary school. It is suggested that SRP based teaching can bridge parts of the identified gaps. Finally, it is found that in order for SRP......In didactics of mathematics, researchers have for decades been interested in how to teach students to pose questions and solve problems. Several approaches rely on the idea, that students learn mathematics, when they are engaged in activities similar to research mathematicians. This PhD project...... touch upon these ideas from the perspective offered by the Anthropological Theory of Didactics (ATD ). Within ATD, teaching is proposed to be designed as Study and Research Paths (SRP). This thesis investigates how SRP's support the students' learning of mathematics in a bidisciplinary context involving...

  1. A little more conversation please? Qualitative study of researchers' and patients' interview accounts of training for patient and public involvement in clinical trials.

    Science.gov (United States)

    Dudley, Louise; Gamble, Carrol; Allam, Alison; Bell, Philip; Buck, Deborah; Goodare, Heather; Hanley, Bec; Preston, Jennifer; Walker, Alison; Williamson, Paula; Young, Bridget

    2015-04-27

    Training in patient and public involvement (PPI) is recommended, yet little is known about what training is needed. We explored researchers' and PPI contributors' accounts of PPI activity and training to inform the design of PPI training for both parties. We used semi-structured qualitative interviews with researchers (chief investigators and trial managers) and PPI contributors, accessed through a cohort of clinical trials, which had been funded between 2006 and 2010. An analysis of transcripts of audio-recorded interviews drew on the constant comparative method. We interviewed 31 researchers and 17 PPI contributors from 28 trials. Most researchers could see some value in PPI training for researchers, although just under half had received such training themselves, and some had concerns about the purpose and evidence base for PPI training. PPI contributors were evenly split in their perceptions of whether researchers needed training in PPI. Few PPI contributors had themselves received training for their roles. Many informants across all groups felt that training PPI contributors was unnecessary because they already possessed the skills needed. Informants were also concerned that training would professionalise PPI contributors, limiting their ability to provide an authentic patient perspective. However, informants welcomed informal induction 'conversations' to help contributors understand their roles and support them in voicing their opinions. Informants believed that PPI contributors should be confident, motivated, intelligent, focussed on helping others and have relevant experience. Researchers looked for these qualities when selecting contributors, and spoke of how finding 'the right' contributor was more important than accessing 'the right' training. While informants were broadly receptive to PPI training for researchers, they expressed considerable reluctance to training PPI contributors. Providers of training will need to address these reservations. Our

  2. Applying the Plan-Do-Study-Act (PDSA) approach to a large pragmatic study involving safety net clinics.

    Science.gov (United States)

    Coury, Jennifer; Schneider, Jennifer L; Rivelli, Jennifer S; Petrik, Amanda F; Seibel, Evelyn; D'Agostini, Brieshon; Taplin, Stephen H; Green, Beverly B; Coronado, Gloria D

    2017-06-19

    The Plan-Do-Study-Act (PDSA) cycle is a commonly used improvement process in health care settings, although its documented use in pragmatic clinical research is rare. A recent pragmatic clinical research study, called the Strategies and Opportunities to STOP Colon Cancer in Priority Populations (STOP CRC), used this process to optimize the research implementation of an automated colon cancer screening outreach program in intervention clinics. We describe the process of using this PDSA approach, the selection of PDSA topics by clinic leaders, and project leaders' reactions to using PDSA in pragmatic research. STOP CRC is a cluster-randomized pragmatic study that aims to test the effectiveness of a direct-mail fecal immunochemical testing (FIT) program involving eight Federally Qualified Health Centers in Oregon and California. We and a practice improvement specialist trained in the PDSA process delivered structured presentations to leaders of these centers; the presentations addressed how to apply the PDSA process to improve implementation of a mailed outreach program offering colorectal cancer screening through FIT tests. Center leaders submitted PDSA plans and delivered reports via webinar at quarterly meetings of the project's advisory board. Project staff conducted one-on-one, 45-min interviews with project leads from each health center to assess the reaction to and value of the PDSA process in supporting the implementation of STOP CRC. Clinic-selected PDSA activities included refining the intervention staffing model, improving outreach materials, and changing workflow steps. Common benefits of using PDSA cycles in pragmatic research were that it provided a structure for staff to focus on improving the program and it allowed staff to test the change they wanted to see. A commonly reported challenge was measuring the success of the PDSA process with the available electronic medical record tools. Understanding how the PDSA process can be applied to pragmatic

  3. Using a Mobile Laboratory to Study Mental Health, Addictions and Violence: A Research Plan

    Directory of Open Access Journals (Sweden)

    Samantha Wells

    2011-01-01

    Full Text Available This paper describes an innovative new research program, Researching Health in Ontario Communities (RHOC, designed to improve understanding, treatment and prevention of co-occurring mental health, addictions, and violence problems. RHOC brings together a multi-disciplinary team of investigators to implement an integrated series of research studies (including pilot studies and full studies. The project involves use a mobile research laboratory to collect a wide range of biological, behavioral and social data in diverse communities across Ontario, Canada, including remote and rural communities, areas experiencing poverty and social disorganization, urban areas, and Aboriginal communities. This paper describes the project background and research plan as well as the anticipated contributions of the project to participating Ontario communities and to broader scientific knowledge.

  4. 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

  5. Quantifying Engagement: Measuring Player Involvement in Human-Avatar Interactions

    Science.gov (United States)

    Norris, Anne E.; Weger, Harry; Bullinger, Cory; Bowers, Alyssa

    2014-01-01

    This research investigated the merits of using an established system for rating behavioral cues of involvement in human dyadic interactions (i.e., face-to-face conversation) to measure involvement in human-avatar interactions. Gameplay audio-video and self-report data from a Feasibility Trial and Free Choice study of an effective peer resistance skill building simulation game (DRAMA-RAMA™) were used to evaluate reliability and validity of the rating system when applied to human-avatar interactions. The Free Choice study used a revised game prototype that was altered to be more engaging. Both studies involved girls enrolled in a public middle school in Central Florida that served a predominately Hispanic (greater than 80%), low-income student population. Audio-video data were coded by two raters, trained in the rating system. Self-report data were generated using measures of perceived realism, predictability and flow administered immediately after game play. Hypotheses for reliability and validity were supported: Reliability values mirrored those found in the human dyadic interaction literature. Validity was supported by factor analysis, significantly higher levels of involvement in Free Choice as compared to Feasibility Trial players, and correlations between involvement dimension sub scores and self-report measures. Results have implications for the science of both skill-training intervention research and game design. PMID:24748718

  6. Gift and sacrifice: parental involvement in Latino adolescents' education.

    Science.gov (United States)

    Ceballo, Rosario; Maurizi, Laura K; Suarez, Gloria A; Aretakis, Maria T

    2014-01-01

    Although myriad studies document the benefits of parental involvement in education on various indicators of children's academic performance, less research examines parental involvement among adolescents in low-income Latino families. Incorporating a multidimensional conceptualization of parental involvement, this study examined the relation between parental involvement and academic outcomes in a sample of 223 low-income, Latino adolescents. Results indicated that three types of parental involvement (gift/sacrifice, future discussions/academic socialization, and school involvement) had significant, positive associations with academic outcomes. Moreover, our results suggest that parents' stories about struggles with poverty and immigration are an important component of parental involvement, contributing to adolescents' desire to succeed academically and "give back" to parents. Additionally, our findings indicated that the positive relations between parental involvement and academic outcomes were stronger for immigrant youth and for those with higher endorsements of the Latino cultural value of respeto (respect).

  7. Multiple proteins of White spot syndrome virus involved in ...

    Indian Academy of Sciences (India)

    The recognition and attachment of virus to its host cell surface is a critical step for viral infection. Recent research revealed that -integrin was involved in White spot syndrome virus (WSSV) infection. In this study, the interaction of -integrin with structure proteins of WSSV and motifs involved in WSSV infection was ...

  8. Exploring the experiences of substitute decision-makers with an exception to consent in a paediatric resuscitation randomised controlled trial: study protocol for a qualitative research study

    Science.gov (United States)

    de Laat, Sonya; Schwartz, Lisa

    2016-01-01

    Introduction Prospective informed consent is required for most research involving human participants; however, this is impracticable under some circumstances. The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) outlines the requirements for research involving human participants in Canada. The need for an exception to consent (deferred consent) is recognised and endorsed in the TCPS for research in individual medical emergencies; however, little is known about substitute decision-maker (SDM) experiences. A paediatric resuscitation trial (SQUEEZE) (NCT01973907) using an exception to consent process began enrolling at McMaster Children's Hospital in January 2014. This qualitative research study aims to generate new knowledge on SDM experiences with the exception to consent process as implemented in a randomised controlled trial. Methods and analysis The SDMs of children enrolled into the SQUEEZE pilot trial will be the sampling frame from which ethics study participants will be derived. Design: Qualitative research study involving individual interviews and grounded theory methodology. Participants: SDMs for children enrolled into the SQUEEZE pilot trial. Sample size: Up to 25 SDMs. Qualitative methodology: SDMs will be invited to participate in the qualitative ethics study. Interviews with consenting SDMs will be conducted in person or by telephone, taped and professionally transcribed. Participants will be encouraged to elaborate on their experience of being asked to consent after the fact and how this process occurred. Analysis: Data gathering and analysis will be undertaken simultaneously. The investigators will collaborate in developing the coding scheme, and data will be coded using NVivo. Emerging themes will be identified. Ethics and dissemination This research represents a rare opportunity to interview parents/guardians of critically ill children enrolled into a resuscitation trial without their knowledge or prior consent

  9. Social influences upon injection initiation among street-involved youth in Vancouver, Canada: a qualitative study

    Directory of Open Access Journals (Sweden)

    Wood Evan

    2009-04-01

    Full Text Available Abstract Background Street-involved youth are a population at risk of adopting injection as a route of administration, and preventing the transition to injection drug use among street youth represents a public health priority. In order to inform epidemiological research and prevention efforts, we conducted a qualitative study to investigate the initiation of injection drug use among street-involved youth in Vancouver, Canada. Methods Qualitative interviews with street youth who inject drugs elicited descriptions of the adoption of injection as a route of administration. Interviewees were recruited from the At-Risk Youth Study (ARYS, a cohort of street-involved youth who use illicit drugs in Vancouver, Canada. Audio recorded interviews were transcribed verbatim and a thematic analysis was conducted. Results 26 youth aged 16 to 26 participated in this study, including 12 females. Among study participants the first injection episode frequently featured another drug user who facilitated the initiation of injecting. Youth narratives indicate that the transition into injecting is influenced by social interactions with drug using peers and evolving perceptions of injecting, and rejecting identification as an injector was important among youth who did not continue to inject. It appears that social conventions discouraging initiating young drug users into injection exist among established injectors, although this ethic is often ignored. Conclusion The importance of social relationships with other drug users within the adoption of injection drug use highlights the potential of social interventions to prevent injection initiation. Additionally, developing strategies to engage current injectors who are likely to initiate youth into injection could also benefit prevention efforts.

  10. Effects of Religious Involvement on Parent-child Communication Regarding Schooling: A Study of Black Youth in the United States

    Science.gov (United States)

    Madyun, Na'im; Lee, Moosung

    2010-01-01

    A growing number of Black teens are becoming religiously involved. This undoubtedly intersects with another trend in Black communities, the changing structure of the Black family. Research has shown that school-related dialogue between parent and child is an important factor in educational outcomes. This study set out to determine if there might…

  11. Are media still the message? A comparative study of high and low involvement brands in Serbia

    Directory of Open Access Journals (Sweden)

    Jovanović Neda

    2006-01-01

    Full Text Available The aim of this study is to investigate the importance of media choice for branding of high and low involvement products. Given the magnitude of branding today and the complexity of the media environment, the lack of modern studies comparing different media from the consumers' perspective especially in different cultural settings, is both profound and surprising. Studies of Larkin (1978 and Stephens (1981 are not only outdated but also US-specific. Furthermore, although McLuhan (2002 has famously claimed that the medium is the message, there is no contemporary marketing study examining this claim in relation to major branding elements such as brand awareness perceived quality, brand attitude, and brand image. The study's major contribution is that it attempts to fill in this research gap by investigating if and how consumers differentiate brands, with respect to the media that they appear in. A comparison between low and high involvement brands was considered apparent for a more comprehensive research approach. This study is a deductive and a quantitative one. Sample consisted of 160 respondents in Serbia, ranging from 18 to 59 years old, and the data collection method was a self-administered e-mail questionnaire. Major findings suggest that different media indeed affect various aspects of branding, with magazines favoring most of brand image characteristics, and television favoring brand awareness. However, analysis also indicated a clustering of television, magazine, and outdoor as media with similar scores in almost every aspect. This clustering has the potential to affect both branding and media planning decisions. Internet is found to be a promising medium for the future in Serbia but not so much for the present.

  12. Study of research needs and priorities in radioactive waste management

    International Nuclear Information System (INIS)

    Carson, W.E.; Mitchell, W. III.

    1984-02-01

    This report presents the results of an assessment of long-range research needs in nuclear waste management. The purpose is to aid the Director of Energy Research in determining the health of DOE's research programs. The intent of the project reported here was to identify additional, basic research necessary in the 1980s and 1990s to develop an adequate scientific data base for nuclear waste management activities likely to be important around the turn of the century. The recommendations resulted from an overview of the entire area of nuclear waste management, not from focused examinations of narrow topics within that area. The suggested research may be the subject of future studies or more intense work by DOE. The recommendations presented in this report are not accompanied by designations of responsible program offices within DOE. It is anticipated that the contents of the report will be shared with the program offices involved and that those offices will recognize and respond to recommendations within their purviews

  13. Is Investment in Maize Research Balanced and Justified? An Empirical Study

    Directory of Open Access Journals (Sweden)

    Hari Krishna Shrestha

    2016-12-01

    Full Text Available The objective of this study was to investigate whether the investment in maize research was adequate and balanced in Nepalese context. Resource use in maize research was empirically studied with standard congruency analysis by using Full Time Equivalent (FTE of researchers as a proxy measure of investment. The number of researchers involved in maize was 61 but it was only 21.25 on FTE basis, indicating that full time researchers were very few as compared to the cultivated area of maize in the country. Statistical analysis revealed that the investment in maize research was higher in Tarai and lower in the Hills. Congruency index on actual production basis was found low across the eco-zones and even lower across the geographical regions indicating that the investment in maize research was a mismatch and not justified. While adjusted with the equity factor and the research progress factor in the analysis substantial difference was not found in congruency index. This study recommends that substantial increase in investment in maize research is needed with balanced and justified manner across the eco-zones and the geographical regions. Hills need special attention to increase the investment as maize output value is higher in this eco-zone. Eastern and western regions also need increased investment in maize according to their contribution in the output value.

  14. Research reactors

    International Nuclear Information System (INIS)

    Kowarski, L.

    1955-01-01

    It brings together the techniques data which are involved in the discussion about the utility for a research institute to acquire an atomic reactor for research purposes. This type of decision are often taken by non-specialist people who can need a brief presentation of a research reactor and its possibilities in term of research before asking advises to experts. In a first part, it draws up a list of the different research programs which can be studied by getting a research reactor. First of all is the reactor behaviour and kinetics studies (reproducibility factor, exploration of neutron density, effect of reactor structure, effect of material irradiation...). Physical studies includes study of the behaviour of the control system, studies of neutron resonance phenomena and study of the fission process for example. Chemical studies involves the study of manipulation and control of hot material, characterisation of nuclear species produced in the reactor and chemical effects of irradiation on chemical properties and reactions. Biology and medicine research involves studies of irradiation on man and animals, genetics research, food or medical tools sterilization and neutron beams effect on tumour for example. A large number of other subjects can be studied in a reactor research as reactor construction material research, fabrication of radioactive sources for radiographic techniques or applied research as in agriculture or electronic. The second part discussed the technological considerations when choosing the reactor type. The technological factors, which are considered for its choice, are the power of the reactor, the nature of the fuel which is used, the type of moderator (water, heavy water, graphite or BeO) and the reflector, the type of coolants, the protection shield and the control systems. In the third part, it described the characteristics (place of installation, type of combustible and comments) and performance (power, neutron flux ) of already existing

  15. Waste treatment and immobilization technologies involving inorganic sorbents. Final report of a co-ordinated research programme 1992-1996

    International Nuclear Information System (INIS)

    1997-06-01

    A Coordinated Research Programme (CRP) for the application of inorganic sorbents in liquid waste treatment and immobilization was initiated by the IAEA in 1992. The results of this CRP are presented in this report. Fifteen institutions from fourteen countries were involved in this programme. The framework of this CRP was: (1) to conduct fundamental studies on sorbent structure and sorption mechanism; (2) to obtain thermodynamic and kinetic data of the treatment process; (3) to define sorption mechanism of radionuclides on different soils; (4) to identify sorbents appropriate for treatment of liquid waste streams; (5) to develop standard tests to be able to compare results of different groups of investigations. Refs, figs, tabs

  16. A Study of the Influence of College Students' Exercise and Leisure Motivations on the Leisure Benefits – Using Leisure Involvement as a Moderator

    OpenAIRE

    Chiung-En Huang; Cheng-Yu Tsai; Shane-Chung Lee

    2014-01-01

    This study aim at the influence of college students’ exercise and leisure motivations on the leisure benefits while using the leisure involvement as a moderator. Whereby, the research tools used in this study included the application of leisure motivation scale, leisure involvement scale and leisure benefits scale, and a hierarchical regression analysis was performed by using a questionnaire-based survey, in which, a total of 1,500 copies of questionnaires were administered and 917 valid ques...

  17. Does organisational commitment enhance the relationship between job involvement and in-role performance?

    Directory of Open Access Journals (Sweden)

    Talat Islam

    2012-11-01

    Research purpose: This research is aimed at discovering the role of organisational commitment as a mediating variable between the relationship of job involvement and performance. Motivation for the study: The aim of organisations today is to outperform each other in every respect. In order to realise this, the role of employees is crucial. To elicit the best from employees requires much attention from organisations. This research is focused on this specific issue, namely, increasing employees’ performance. Research design, approach and method: The researchers have used structured questionnaires using the quantitative approach. A similar research methodology using the survey method was applied by the researchers to make the results comparable. The simple random sampling technique was used. Data was evaluated on the basis of 208 completed questionnaires. Main findings: Findings of the study indicate that there is a relationship between job involvement and in-role performance. Affective and normative commitment can act as mediator. However, continuance commitment is not a mediator in this relationship. Practical/managerial implications: It is important for organisations that want to gain a competitive edge over its rivals to enhance the level of involvement of its employees. Contribution/value-add: The results of this study will provide a new dimension for managers on how to gain a competitive advantage over rival firms with regard to performance by increasing the level of job involvement.

  18. 40 CFR 26.1203 - Prohibition of research involving intentional exposure of any human subject who is a pregnant...

    Science.gov (United States)

    2010-07-01

    ... 40 Protection of Environment 1 2010-07-01 2010-07-01 false Prohibition of research involving intentional exposure of any human subject who is a pregnant woman (and therefore her fetus), a nursing woman, or a child. 26.1203 Section 26.1203 Protection of Environment ENVIRONMENTAL PROTECTION AGENCY GENERAL...

  19. Regional research exploitation of the LHC a case-study of the required computing resources

    CERN Document Server

    Almehed, S; Eerola, Paule Anna Mari; Mjörnmark, U; Smirnova, O G; Zacharatou-Jarlskog, C; Åkesson, T

    2002-01-01

    A simulation study to evaluate the required computing resources for a research exploitation of the Large Hadron Collider (LHC) has been performed. The evaluation was done as a case study, assuming existence of a Nordic regional centre and using the requirements for performing a specific physics analysis as a yard-stick. Other imput parameters were: assumption for the distribution of researchers at the institutions involved, an analysis model, and two different functional structures of the computing resources.

  20. Cultural influences on positive father involvement in two-parent Mexican-origin families.

    Science.gov (United States)

    Cruz, Rick A; King, Kevin M; Widaman, Keith F; Leu, Janxin; Cauce, Ana Mari; Conger, Rand D

    2011-10-01

    A growing body of research documents the importance of positive father involvement in children's development. However, research on fathers in Latino families is sparse, and research contextualizing the father-child relationship within a cultural framework is needed. The present study examined how fathers' cultural practices and values predicted their fifth-grade children's report of positive father involvement in a sample of 450 two-parent Mexican-origin families. Predictors included Spanish- and English-language use, Mexican and American cultural values, and positive machismo (i.e., culturally related attitudes about the father's role within the family). Positive father involvement was measured by the child's report of his or her father's monitoring, educational involvement, and warmth. Latent variable regression analyses showed that fathers' machismo attitudes were positively related to children's report of positive father involvement and that this association was similar across boys and girls. The results of this study suggest an important association between fathers' cultural values about men's roles and responsibilities within a family and their children's perception of positive fathering.

  1. Peer Effects and Academics’ Industry Involvement

    DEFF Research Database (Denmark)

    Aschhoff, Birgit; Grimpe, Christoph

    This study explores the interaction between professional imprinting and age in the context of industry-science collaboration. Specifically, we examine the impact of localized and personal peer effects on academics’ involvement with industry and how these effects are moderated by the career age...... of the scientist. We suggest that both localized and personal peer effects drive industry involvement but that the effects from such imprinting are more pronounced for younger researchers, suggesting that professional imprinting takes place in the early stages of a scientist’s academic career. Based on a sample...... of 330 German academics in the field of biotechnology and publication data from the Science Citation Index Expanded (SCIE), we find that scientists with industry-oriented co-authors are more likely to be involved with industry (personal peer effect). Moreover, we find that the scientist’s involvement...

  2. Lean Customer Involvement : A Multiple Case Study on the Effects of Kanban on Customer Involvement

    OpenAIRE

    Lundheim, Henning

    2012-01-01

    Customer involvement is an important, but challenging part of software development. Delays and failures can often be attributed to a lack of customer involvement. Different development methodologies provide different strategies for customer involvement, all with their own challenges. Kanban is a new development methodology quickly gaining popularity in the software development community. This thesis aims to answer the question: How does Kanban influence customer involvement? The main prob...

  3. The librarian as research informationist: a case study.

    Science.gov (United States)

    Federer, Lisa

    2013-10-01

    How can an embedded research informationist add value to the scientific output of research teams? The University of California-Los Angeles (UCLA) Louise M. Darling Biomedical Library is an academic health sciences library serving the clinical, educational, and research needs of the UCLA community. A grant from the National Library of Medicine funded a librarian to join a UCLA research team as an informationist. The informationist meets regularly with the research team and provides guidance related to data management, preservation, and other information-related issues. Early results suggest that the informationist's involvement has influenced the team's data gathering, storage, and curation methods. The UCLA Library has also changed the librarian's title to research informationist to reflect the new activities that she performs. The research informationist role provides an opportunity for librarians to become effective members of research teams and improve research output.

  4. Balancing research interests and patient interests: a qualitative study into the intertwinement of care and research in paediatric oncology.

    Science.gov (United States)

    Dekking, Sara A S; van der Graaf, Rieke; Kars, Marijke C; Beishuizen, Auke; de Vries, Martine C; van Delden, Johannes J M

    2015-05-01

    Traditionally, in ethical guidelines and in research ethics literature, care and research are clearly separated based on their different objectives. In contrast, in paediatric oncology, research and care are closely combined. Currently, it is unknown how relevant actors in paediatric oncology perceive this combination of research and care. We conducted a qualitative study into the experiences of those involved in Dutch paediatric oncology with the intertwinement of research and care and the dual role of paediatric oncologists as researchers and treating physicians. A qualitative study approach, using two focus groups and 19 semi-structured, in-depth interviews with paediatric oncologists, research coordinators, parents of children with cancer, and adolescents with cancer. Four themes characterize how actors experience the intertwinement of research and care in paediatric oncology. First, research is considered of major importance, and paediatric oncology professionals convey this message to patients and their parents. Second, there is ambiguity about categorization of studies into cancer therapy as either research or treatment. Third, role conflicts appear within the work of the paediatric oncologists. Finally, the various benefits of combining treatment with research are emphasized. Research is regarded as a fundamental and indispensable characteristic of paediatric oncology practice. Paediatric oncology professionals, parents, and patients have a very positive outlook on combining research and care, but they may not be sufficiently critical with respect to potential conflicts. Increased reflection on how to optimally combine research and care could serve as an important protection of the interests of children with cancer and their parents. © 2015 Wiley Periodicals, Inc.

  5. 40 CFR 26.203 - Prohibition of research conducted or supported by EPA involving intentional exposure of any human...

    Science.gov (United States)

    2010-07-01

    ... her fetus), a nursing woman, or child. 26.203 Section 26.203 Protection of Environment ENVIRONMENTAL... 40 Protection of Environment 1 2010-07-01 2010-07-01 false Prohibition of research conducted or... Involving Intentional Exposure of Human Subjects who are Children or Pregnant or Nursing Women § 26.203...

  6. Mechanisms Involved in Exercise-Induced Cardioprotection: A Systematic Review

    Science.gov (United States)

    Borges, Juliana Pereira; Lessa, Marcos Adriano

    2015-01-01

    Background Acute myocardial infarction is the leading cause of morbidity and mortality worldwide. Furthermore, research has shown that exercise, in addition to reducing cardiovascular risk factors, can also protect the heart against injury due to ischemia and reperfusion through a direct effect on the myocardium. However, the specific mechanism involved in exerciseinduced cardiac preconditioning is still under debate. Objective To perform a systematic review of the studies that have addressed the mechanisms by which aerobic exercise promotes direct cardioprotection against ischemia and reperfusion injury. Methods A search was conducted using MEDLINE, Literatura Latino-Americana e do Caribe de Informação em Ciências da Saúde, and Scientific Electronic Library Online databases. Data were extracted in a standardized manner by two independent researchers, who were responsible for assessing the methodological quality of the studies. Results The search retrieved 78 studies; after evaluating the abstracts, 30 studies were excluded. The manuscripts of the remaining 48 studies were completely read and, of these, 20 were excluded. Finally, 28 studies were included in this systematic review. Conclusion On the basis of the selected studies, the following are potentially involved in the cardioprotective response to exercise: increased heat shock protein production, nitric oxide pathway involvement, increased cardiac antioxidant capacity, improvement in ATP-dependent potassium channel function, and opioid system activation. Despite all the previous investigations, further research is still necessary to obtain more consistent conclusions. PMID:25830711

  7. A Phenomenological Study of Parental Involvement and the Undergraduate College Student Experience

    Science.gov (United States)

    Garrison, David Michael

    2013-01-01

    Parents highly involved in the academic lives of their college-going children have become increasingly common and yet the effect of such involvement on students is poorly understood by student services administrators and faculty. The purpose of this study was to better define the phenomenon of parental involvement in college through an…

  8. A study of Generation Z’s involvement in virtual reality

    Directory of Open Access Journals (Sweden)

    Puchkova E.B.

    2017-12-01

    Full Text Available Background. This study analyzes the characteristics of modern teenagers’ involvement in virtual reality (VR. It also examines various approaches to VR in Russian science. In the current study the concept of virtual reality is defined as a particular informational environment in which a person can exist and develop. It is created by a special class of technical systems, formed on the basis of computer hypertext technology, and has a number of social and psychological characteristics. We pay special attention to the significance of virtual space for generation Z (according to the William Strauss and Neil Howe generational theory. The main factor determining the unique psychological features of the generation Z is its active involvement in virtual reality from the moment of birth. Involvement in a virtual reality is measurable by a teenager’s activity on the Internet. Objective. Our study set out to determine the level of Russian generation Z’s involvement in virtual reality. Design. We analyzed the results of a survey conducted among Moscow adolescents using multivariate profiles. Two hundred fifty-four teenagers 12-14 years old were interviewed during the study. Results and conclusion. Analysis of the data revealed the following: Modern teenagers are involved in VR with varying degrees of depth; their main type of activity on the Internet is searching for educational information and news; and no significant differences by gender in the purposes of using the Internet were found. However, it was also determined that girls’ activity in VR is more related to communication and interpersonal interaction, even though it’s indirect via the Internet, while boys prefer the “gaming” possibilities of VR; that teenagers are rather critical of the information they obtain by the Internet, and that their level of trust in the online information is low. The same trend is evident in the fact that students prefer not to make new friends in virtual

  9. Action research in inter-organisational networks : - impartial studies or the Trojan horse?

    DEFF Research Database (Denmark)

    Goduscheit, René Chester; Rasmussen, Erik Stavnsager; Jørgensen, Jacob Høj

    2007-01-01

    Traditionally, the literature on action research has been aimed at intra-organisational issues. These studies have distinguished between two researcher roles: The problem-solver and the observer. This article addresses the distinct challenges of action research in inter-organisational projects....... In addition to the problem-solver and observer roles, the researcher in an inter-organisational setting can serve as a legitimiser of the project and manage to involve partners that in an ordinary business-to-business setting would not have participated. Based on an action research project in a Danish inter......-organisational network, this article discusses potential pitfalls in the legitimiser role. Lack of clarity in defining the researcher role and project ownership in relation to the funding organisation and the rest of the network can jeopardise the project and potentially the credibility of the researchers. The article...

  10. SELF-REPORTED DIFFERENCES BETWEEN CRASH-INVOLVED AND NON-CRASH-INVOLVED THREE-WHEELER DRIVERS IN SRI LANKA

    Directory of Open Access Journals (Sweden)

    A.K. SOMASUNDARASWARAN, Dr.

    2006-01-01

    Full Text Available Despite being an important mode of transportation in the developing world, little research has been conducted to understand the factors contributing to crashes involving three wheel vehicles. This study surveyed a convenient sample of 505 professional three-wheeler drivers in Sri Lanka to explore the similarities and differences in the demographic and work characteristics between three-wheeler drivers who reported experiencing at least one collision in the past twelve months and those who reported that they were not involved in any collisions. Our study revealed some interesting results that were quite different from those obtained in the studies on professional drivers in developed countries. In particular, both drivers with less than one year and more than five years of driving experience in our study were found to be associated with higher probability of crash involvement. Also, the number of trips per day and the average travel distance per trip were found to be insignificant in delineating between crash-involved and non-crash-involved drivers. Moreover, crash-involved drivers, on average, have significantly fewer working days per week and fewer hours per day, suggesting that the conventional approach used in most developed countries to tackle fatigue among professional drivers do not appear to be suitable for solving the road safety problem involving three-wheeler drivers in a developing country. Also, since the age of most drivers falls in a narrow range, this U-shaped relationship is not likely to be a result of youth and ageing but of inexperience in newer drivers and complacency in more experienced drivers. Lastly, since a relatively large proportion of the drivers had driven without a valid driving license, legislation and enforcement interventions are likely to be less effective than education and engineering countermeasures.

  11. Criticality safety studies involved in actions to improve conditions for storing 'RA' research reactor spent fuel

    International Nuclear Information System (INIS)

    Matausek, M.; Marinkovic, N.

    1998-01-01

    A project has recently been initiated by the VINCA Institute of Nuclear Sciences to improve conditions in the spent fuel storage pool at the 6.5 MW research reactor RA, as well as to consider transferring this spent fuel into a new dry storage facility built for the purpose. Since quantity and contents of fissile material in the spent fuel storage at the RA reactor are such that possibility of criticality accident can not be a priori excluded, according to standards and regulations for handling fissile material outside a reactor, before any action is undertaken subcriticality should be proven under normal, as well as under credible abnormal conditions. To perform this task, comprehensive nuclear criticality safety studies had to be performed. (author)

  12. Is there a role for physician involvement in introducing research to surrogate decision makers in the intensive care unit? (The Approach trial: a pilot mixed methods study).

    Science.gov (United States)

    Burns, K E A; Rizvi, L; Smith, O M; Lee, Y; Lee, J; Wang, M; Brown, M; Parker, M; Premji, A; Leung, D; Hammond Mobilio, M; Gotlib-Conn, L; Nisenbaum, R; Santos, M; Li, Y; Mehta, S

    2015-01-01

    To assess the feasibility of conducting a randomized trial comparing two strategies [physician (MD) vs. non-physician (non-MD)] for approaching substitute decision makers (SDMs) for research and to evaluate SDMs' experiences in being approached for consent. A pilot mixed methods study of first encounters with SDMs. Of 137 SDMs (162 eligibility events), 67 and 70 were randomized to MD and non-MD introductions, respectively. Eighty SDMs (98 events) provided consent and 21 SDMs (24 events) declined consent for studies, including 2 SDMs who provided and declined consent. We identified few missed introductions [4/52 (7.7 %)] and protocol violations [6/117 (5.1 %)], high comfort, satisfaction and acceptance scores and similar consent rates in both arms. SDMs provided consent significantly more often when a patient update was provided in the MD arm. Most SDMs (85.7 %) felt that physician involvement was inconsequential and preferred physician time to be dedicated to patient care; however, SDM experiences were closely related to their recall of being approached and recall was poor. SDMs highlighted 7 themes of importance to them in research surrogate decision-making. SDMs prioritized the personal attributes of the person approaching them over professional designation and preferred physician time to be dedicated to patient care. A mixed methods design evaluated intervention fidelity and provided the rationale for not proceeding to a larger trial, despite achieving all feasibility metrics in the pilot trial. NCT01232621.

  13. Involving migrants in the development of guidelines for communication in cross-cultural general practice consultations: a participatory learning and action research project.

    Science.gov (United States)

    O'Reilly-de Brún, Mary; MacFarlane, Anne; de Brún, Tomas; Okonkwo, Ekaterina; Bonsenge Bokanga, Jean Samuel; Manuela De Almeida Silva, Maria; Ogbebor, Florence; Mierzejewska, Aga; Nnadi, Lovina; van den Muijsenbergh, Maria; van Weel-Baumgarten, Evelyn; van Weel, Chris

    2015-09-21

    The aim of this research was to involve migrants and other key stakeholders in a participatory dialogue to develop a guideline for enhancing communication in cross-cultural general practice consultations. In this paper, we focus on findings about the use of formal versus informal interpreters because dialogues about these issues emerged as central to the identification of recommendations for best practice. This qualitative case study involved a Participatory Learning and Action (PLA) research methodology. The sample comprised 80 stakeholders: 51 from migrant communities; 15 general practitioners (GPs) and general practice staff; 7 established migrants as peer researchers; 5 formal, trained interpreters; and 2 service planners from the national health authority. Galway, Ireland. There was 100% consensus across stakeholder groups that while informal interpreters have uses for migrants and general practice staff, they are not considered acceptable as best practice. There was also 100% consensus that formal interpreters who are trained and working as per a professional code of practice are acceptable as best practice. Policymakers and service planners need to work in partnership with service providers and migrants to progress the implementation of professional, trained interpreters as a routine way of working in general practice. 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.

  14. Lone voices have an emotional content: focussing on mental health service user and carer involvement.

    Science.gov (United States)

    Hitchen, Sherrie; Watkins, Mary; Williamson, Graham R; Ambury, Susan; Bemrose, Gillian; Cook, David; Taylor, Maureen

    2011-01-01

    The purpose of this paper is to describe learning gained from involving service users and carers as researchers in an action research study. The researchers aimed to introduce self-directed support in mental health services--part of the government's personalisation agenda, which requires a move from current social care commissioning, where a person is matched to available services, to one where a person self-assesses, has an agreed support plan and then with appropriate help, purchases his or her own services to lead as independent a life as possible. This development is allied closely with the mental health service recovery approach. Three service users and two carers were recruited to work alongside the lead researcher. Service users were fully involved in the steering group - part of participatory action research project. Data were collected from: debriefing meetings with co-researchers between April and December 2007; a group interview held by the lead researcher; and participants' journal comments and self-reflections. The main areas in which service users and carers found involvement difficult were: overcoming professional language barriers; emotional impact; and power imbalances between themselves and professionals. Findings suggest that considerable improvement is required by mental health professionals and managers if service users and carers are successfully involved in projects. This is a small study within a larger action research project. Findings are not generalisable owing to the small sample; however, findings are supported by the service-user involvement literature. Few studies explore participation effects on service users and carers from their perspective. This research provides insights into what needs to be addressed to improve service user and carer involvement to improve mental health services.

  15. A qualitative study on acceptable levels of risk for pregnant women in clinical research.

    Science.gov (United States)

    van der Zande, Indira S E; van der Graaf, Rieke; Oudijk, Martijn A; van Delden, Johannes J M

    2017-05-15

    There is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, as a case-study. We conducted a prospective qualitative study using 35 in-depth semi-structured interviews and one focus group. We interviewed healthcare professionals, Research Ethics Committee members (RECs) and regulators who are actively involved in the conduct of clinical research in pregnant women, in addition to pregnant women recruited for the APOSTEL VI case-study in the Netherlands. Three themes characterise the way stakeholders view risks in clinical research in pregnant women in general. Additionally, one theme characterises the way healthcare professionals and pregnant women view risks with respect to the case-study specifically. First, ideas on what constitutes an acceptable level of risk in general ranged from a preference for zero risk for the foetus up to minimal risk. Second, the desirability of clinical research in pregnant women in general was questioned altogether. Third, stakeholders proposed to establish an upper limit of risk in potentially beneficial clinical research in pregnant women in order to protect the foetus and the pregnant woman from harm. Fourth and finally, the case-study illustrates that healthcare professionals' individual perception of risk may influence recruitment. Healthcare professionals, RECs, regulators and pregnant women are all risk adverse in practice, possibly explaining the continuing underrepresentation of pregnant women in clinical research. Determining the acceptable levels of risk on a universal level alone is insufficient

  16. Relative Effects of Psychological Flexibility, Parental Involvement ...

    African Journals Online (AJOL)

    A critical analysis and understanding of secondary students' experiences and of safety in public schools are currently lacking in the literature and warrant further research. This study investigated the relative effects of psychological flexibility, parental involvement and school climate on secondary school student's school ...

  17. Involving, Sharing, Analysing—Potential of the Participatory Photo Interview

    Directory of Open Access Journals (Sweden)

    Bettina Kolb

    2008-09-01

    Full Text Available This article discusses the photo interview method used in a participatory inter- and transdisciplinary research setting. The photo interview has proven particularly useful for sustainability and environmental studies in which eliciting community points of view is crucial to the research effort. Based on experiences in several countries, the author describes and analyses the photo interview process and its three phases—involving, sharing and analysing—and explores potential influences on data quality. In the first phase, researchers use the photo interview method to involve community residents from different levels of society in the research process. In the second phase, the photo interview method encourages community residents and scientists to share insights and perspectives and to partner in developing a common understanding of local structures, processes, and possible solutions. In the third phase, the photo interview method allows researchers to analyse visual and textual data as a representation of a local societal context. In decoding images, researchers ground the analysis in subjective perspectives, use residents' visual codes along with other methods to further analyse community data, and explore the wider societal context in which the study is embedded. URN: urn:nbn:de:0114-fqs0803127

  18. Research nurses in New Zealand intensive care units: A qualitative descriptive study.

    Science.gov (United States)

    Mackle, Diane; Nelson, Katherine

    2018-04-20

    This study explored the role of the research nurse in New Zealand (NZ) Level III intensive care units (ICU). Little was known about this role in NZ prior to this study. To describe the role and responsibilities of NZ ICU research nurses. A qualitative, descriptive approach, using semi structured interviews was used. The study was conducted in six Level III ICUs throughout NZ that employed a research nurse. Interviews were conducted with research nurses (n = 11), principal investigators (n = 6) and nurse managers (n = 6), and the findings were triangulated. The views across all ICUs and stakeholders were generally similar, with differences only being in some operational areas. This study found that the primary role of the research nurse was trial management, where they coordinated all elements of trial conduct. Almost half of the research nurses were involved in trial design through their positions on management committees. Research nurses also played a vital role in patient and trial advocacy, and they bridged the knowledge gap by bringing research to staff nurses, patients and their families. The majority of research nurses reported to a nursing line manager, and had an informal accountability to the PI. The role of NZ ICU research nurses is similar to their international counterparts. This study provides clarity about the research nurse role and showcases their key contribution in ensuring that NZ ICUs undertake high quality research, thus contributing to potential improvements for future patients' outcomes. Copyright © 2018 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

  19. [ETHICAL CONDUCT FOR RESEARCH INVOLVING INDIGENOUS PEOPLE IN FRANCE: A COMMENT OF THE CNRS ETHICS COMMITTEE OPINION ON THE IMPERATIVE OF FAIRNESS IN THE RELATIONSHIP BETWEEN RESEARCHERS AND INDIGENOUS PEOPLES].

    Science.gov (United States)

    Burelli, Thomas; Bambridge, Tamatoa

    2015-12-01

    Historically, scientific research and colonization process have maintained very close ties. In order to frame research involving indigenous peoples and to avoid situations of abuse, some States have developed very detailed ethicalframeworks. In France, there are no ethicalframework comparable to those observed in particular in Anglo-Saxon countries like Canada. Extensive discussions were conducted by the Ethics Committee of the CNRS leading to the adoption of an opinion of a high quality but which appears largely unknown and under-exploited. This opinion deals with "the delicate question of the rights of local and indigenous populations during the research projected conducted with their support in developed and developing countries (DCs)". In this paper, we propose to analyze how this opinion can be considered remarkable because it recognizes the current challenges of research projects involving indigenous people, but also because of his recommendations. We still see that the scope of its recommendations is however limited so far although some encouraging experiences like the recent adoption of the CRIOBE centre code of ethics in French Polynesia can be observed.

  20. Nursing research. Components of a clinical research study.

    Science.gov (United States)

    Bargagliotti, L A

    1988-09-01

    Nursing research is the systematic collection and analysis of data about clinically important phenomena. While there are norms for conducting research and rules for using certain research procedures, the reader must always filter the research report against his or her nursing knowledge. The most common questions a reader should ask are "Does it make sense? Can I think of any other reasonable explanation for the findings? Do the findings fit what I have observed?" If the answers are reasonable, research findings from carefully conducted studies can provide a basis for making nursing decisions. One of the earliest accounts of nursing research, which indicates the power of making systematic observations, was Florence Nightingale's study. It compared deaths among soldiers in the Crimean War with deaths of soldiers in the barracks of London. Her research demonstrated that soldiers in the barracks had a much higher death rate than did the soldiers at war. On the basis of the study, sanitary conditions in the barracks were changed substantially.

  1. Culture Studies in the Field of International Business Research

    DEFF Research Database (Denmark)

    Worm, Verner; Li, Xin; Jakobsen, Michael

    Purpose: The purpose of this paper is to describe the status of culture studies within the field of international business research, and to examine how two main paradigms – essentialism and social constructivism – relate to the discourse in this field. We analyze the main points of the two...... in this paper. Practical implications: We encourage practitioners to learn how to switch, both sequentially and spatially, between the two paradigms of culture (fundamentally incommensurable though they are). This involves taking a “both/or” approach to the two paradigms. Originality/Value: We show...

  2. Increasing Public Access to Scientific Research through Stakeholder Involvement: Ecological Effects of Sea Level Rise in the Northern Gulf of Mexico

    Science.gov (United States)

    Hagen, S. C.; Stephens, S. H.; DeLorme, D. E.; Ruple, D.; Graham, L.

    2013-12-01

    Sea level rise (SLR) has the potential to have a myriad of deleterious effects on coastal ecology and human infrastructure. Stakeholders, including managers of coastal resources, must be aware of potential consequences of SLR and adjust their plans accordingly to protect and preserve the resources under their care. Members of the public, particularly those who live or work in coastal areas, should also be informed about the results of scientific research on the effects of SLR. However, research results are frequently published in venues or formats to which resource managers and the broader public have limited access. It is imperative for scientists to move beyond traditional publication venues in order to more effectively disseminate the results of their research (Dennison, W. 2007, Estu. Coast. Shelf Sci. 77, 185). One potentially effective way to advance public access to research is to incorporate stakeholder involvement into the research project process in order to target study objectives and tailor communication products toward stakeholder needs (Lemos, M. & Morehouse, B. 2005, Glob. Env. Chg. 15, 57). However, it is important to manage communication and clarify participant expectations during this type of research (Gawith, M. et al. 2009, Glob. Env. Chg. 19, 113). This presentation describes the process being undertaken by an ongoing 5-year multi-disciplinary NOAA-funded project, Ecological Effects of Sea Level Rise in the Northern Gulf of Mexico (EESLR-NGOM), to improve accessibility and utility of scientific research results through stakeholder engagement. The EESLR-NGOM project is assessing the ecological risks from SLR along the Mississippi, Alabama and Florida Panhandle coasts, coastal habitats, and floodplains. It has incorporated stakeholder involvement throughout the research process so as to better target and tailor the emerging research products to meet resource managers' needs, as well as to facilitate eventual public dissemination of results. An

  3. Predictors of Early Community Involvement: Advancing the Self and Caring for Others.

    Science.gov (United States)

    Lawford, Heather L; Ramey, Heather L

    2017-03-01

    Recent research on community involvement points to the importance of both agentic (advancing the self) and communal motives (serving others) as key predictors, though few studies have examined both simultaneously. At the same time, research has identified generativity, defined as concern for future generations as a legacy of the self, as particularly relevant for community involvement. Moreover, generativity involves both agentic and communal motives, meaning that advancing personal goals and caring for others are integrated in this construct. Therefore, the purpose of this study was to examine how individual differences in attributes pertaining to self and to others-specifically, self-esteem, initiative, and empathy-related to both generativity and community involvement. A sample of adolescents (N = 160; 64% female, M age  = 17) and a sample of young adults (N = 237; 84% female, M age  = 20) completed a survey including measures of community involvement and generativity. Generative concern fully mediated the associations between individual differences (self-esteem, initiative, and empathy) and community involvement, suggesting that the early generativity has a role in fostering capacities and contribution in youth. These developmental indicators pertaining to self and others link to actions that benefit the community through a desire to benefit future generations. © Society for Community Research and Action 2017.

  4. Case Study Research Methodology in Nursing Research.

    Science.gov (United States)

    Cope, Diane G

    2015-11-01

    Through data collection methods using a holistic approach that focuses on variables in a natural setting, qualitative research methods seek to understand participants' perceptions and interpretations. Common qualitative research methods include ethnography, phenomenology, grounded theory, and historic research. Another type of methodology that has a similar qualitative approach is case study research, which seeks to understand a phenomenon or case from multiple perspectives within a given real-world context.

  5. Predictors of activity involvement in dementia care homes: a cross-sectional study.

    Science.gov (United States)

    Smit, Dieneke; de Lange, Jacomine; Willemse, Bernadette; Pot, Anne Margriet

    2017-08-04

    Despite the finding that involvement in activities is one of the most important needs of residents with dementia living in care homes, care facilities struggle to fulfill this need. Over the years, various factors are suggested which may contribute to or disable activity provision in dementia care homes. These include limited financial resources, task oriented staff and disease-related characteristics of residents. This study aims to further clarify which of these factors predict higher activity involvement. Data were derived from the second measurement (2011) of the Living Arrangements for people with Dementia study. One thousand two hundred eighteen people residing in 139 dementia care homes were involved. Forty predictors of higher involvement were studied. Multilevel backward regression analyses were performed. The most important predictors of higher involvement were: absence of agitation, less ADL dependency, and a higher cognitive status of the residents, higher staff educational level, lower experienced job demands by care staff and a smaller number of residents living in the dementia care wards of a facility. More social supervisor support as perceived by staff was found to predict less activity involvement. To increase the activity involvement of care home residents with dementia it seems vital to: 1) reduce staff's experienced job demands; 2) elevate their overall educational level; 3) train staff to provide suitable activities, taking account of the behavior and preserved capabilities of residents; and 4) foster transition towards small-scale care. In order to achieve these aims, care organizations might need to evaluate the use of their financial means.

  6. Research Ethics

    Science.gov (United States)

    Dooly, Melinda; Moore, Emilee; Vallejo, Claudia

    2017-01-01

    Qualitative research, especially studies in educational contexts, often brings up questions of ethics because the study design involves human subjects, some of whom are under age (e.g. data collected in primary education classrooms). It is not always easy for young researchers to anticipate where ethical issues might emerge while designing their…

  7. United States private-sector physicians and pharmaceutical contract research: a qualitative study.

    Science.gov (United States)

    Fisher, Jill A; Kalbaugh, Corey A

    2012-01-01

    There have been dramatic increases over the past 20 years in the number of nonacademic, private-sector physicians who serve as principal investigators on US clinical trials sponsored by the pharmaceutical industry. However, there has been little research on the implications of these investigators' role in clinical investigation. Our objective was to study private-sector clinics involved in US pharmaceutical clinical trials to understand the contract research arrangements supporting drug development, and specifically how private-sector physicians engaged in contract research describe their professional identities. We conducted a qualitative study in 2003-2004 combining observation at 25 private-sector research organizations in the southwestern United States and 63 semi-structured interviews with physicians, research staff, and research participants at those clinics. We used grounded theory to analyze and interpret our data. The 11 private-sector physicians who participated in our study reported becoming principal investigators on industry clinical trials primarily because contract research provides an additional revenue stream. The physicians reported that they saw themselves as trial practitioners and as businesspeople rather than as scientists or researchers. Our findings suggest that in addition to having financial motivation to participate in contract research, these US private-sector physicians have a professional identity aligned with an industry-based approach to research ethics. The generalizability of these findings and whether they have changed in the intervening years should be addressed in future studies. Please see later in the article for the Editors' Summary.

  8. United States private-sector physicians and pharmaceutical contract research: a qualitative study.

    Directory of Open Access Journals (Sweden)

    Jill A Fisher

    Full Text Available There have been dramatic increases over the past 20 years in the number of nonacademic, private-sector physicians who serve as principal investigators on US clinical trials sponsored by the pharmaceutical industry. However, there has been little research on the implications of these investigators' role in clinical investigation. Our objective was to study private-sector clinics involved in US pharmaceutical clinical trials to understand the contract research arrangements supporting drug development, and specifically how private-sector physicians engaged in contract research describe their professional identities.We conducted a qualitative study in 2003-2004 combining observation at 25 private-sector research organizations in the southwestern United States and 63 semi-structured interviews with physicians, research staff, and research participants at those clinics. We used grounded theory to analyze and interpret our data. The 11 private-sector physicians who participated in our study reported becoming principal investigators on industry clinical trials primarily because contract research provides an additional revenue stream. The physicians reported that they saw themselves as trial practitioners and as businesspeople rather than as scientists or researchers.Our findings suggest that in addition to having financial motivation to participate in contract research, these US private-sector physicians have a professional identity aligned with an industry-based approach to research ethics. The generalizability of these findings and whether they have changed in the intervening years should be addressed in future studies. Please see later in the article for the Editors' Summary.

  9. The Relation between Parental Involvement and Math Anxiety: Implications for Mathematics Achievement

    Science.gov (United States)

    Roberts, Steven O.; Vukovic, Rose K.

    2011-01-01

    Previous research served as the platform for this study's research question: Does math anxiety mediate the relation between parental involvement and mathematics achievement? The primary purpose of this study was to examine this mediation model in a sample of at-risk second graders. Due to previous research, the investigators hypothesized that math…

  10. Informed Consent and Clinical Research Involving Children and Adolescents: Implications of the Revised APA Ethics Code and HIPAA

    Science.gov (United States)

    Fisher, Celia B.

    2004-01-01

    In 2003, 2 new sets of rules and regulations affecting the conduct of clinical research involving children and adolescents went into effect: the revised American Psychological Association's (APA) Ethical Principles of Psychologists and Code of Conduct (APA, 2002; effective June 1, 2003) and the Privacy Rule (45 CFR Part 160 and A and E of Part…

  11. Cluster-randomized Studies in Educational Research: Principles and Methodological Aspects

    Directory of Open Access Journals (Sweden)

    Dreyhaupt, Jens

    2017-05-01

    Full Text Available An increasing number of studies are being performed in educational research to evaluate new teaching methods and approaches. These studies could be performed more efficiently and deliver more convincing results if they more strictly applied and complied with recognized standards of scientific studies. Such an approach could substantially increase the quality in particular of prospective, two-arm (intervention studies that aim to compare two different teaching methods. A key standard in such studies is randomization, which can minimize systematic bias in study findings; such bias may result if the two study arms are not structurally equivalent. If possible, educational research studies should also achieve this standard, although this is not yet generally the case. Some difficulties and concerns exist, particularly regarding organizational and methodological aspects. An important point to consider in educational research studies is that usually individuals cannot be randomized, because of the teaching situation, and instead whole groups have to be randomized (so-called “cluster randomization”. Compared with studies with individual randomization, studies with cluster randomization normally require (significantly larger sample sizes and more complex methods for calculating sample size. Furthermore, cluster-randomized studies require more complex methods for statistical analysis. The consequence of the above is that a competent expert with respective special knowledge needs to be involved in all phases of cluster-randomized studies.Studies to evaluate new teaching methods need to make greater use of randomization in order to achieve scientifically convincing results. Therefore, in this article we describe the general principles of cluster randomization and how to implement these principles, and we also outline practical aspects of using cluster randomization in prospective, two-arm comparative educational research studies.

  12. Cluster-randomized Studies in Educational Research: Principles and Methodological Aspects.

    Science.gov (United States)

    Dreyhaupt, Jens; Mayer, Benjamin; Keis, Oliver; Öchsner, Wolfgang; Muche, Rainer

    2017-01-01

    An increasing number of studies are being performed in educational research to evaluate new teaching methods and approaches. These studies could be performed more efficiently and deliver more convincing results if they more strictly applied and complied with recognized standards of scientific studies. Such an approach could substantially increase the quality in particular of prospective, two-arm (intervention) studies that aim to compare two different teaching methods. A key standard in such studies is randomization, which can minimize systematic bias in study findings; such bias may result if the two study arms are not structurally equivalent. If possible, educational research studies should also achieve this standard, although this is not yet generally the case. Some difficulties and concerns exist, particularly regarding organizational and methodological aspects. An important point to consider in educational research studies is that usually individuals cannot be randomized, because of the teaching situation, and instead whole groups have to be randomized (so-called "cluster randomization"). Compared with studies with individual randomization, studies with cluster randomization normally require (significantly) larger sample sizes and more complex methods for calculating sample size. Furthermore, cluster-randomized studies require more complex methods for statistical analysis. The consequence of the above is that a competent expert with respective special knowledge needs to be involved in all phases of cluster-randomized studies. Studies to evaluate new teaching methods need to make greater use of randomization in order to achieve scientifically convincing results. Therefore, in this article we describe the general principles of cluster randomization and how to implement these principles, and we also outline practical aspects of using cluster randomization in prospective, two-arm comparative educational research studies.

  13. Broadening Public Participation in Systematic Reviews: A Case Example Involving Young People in Two Configurative Reviews

    Science.gov (United States)

    Oliver, Kathryn; Rees, Rebecca; Brady, Louca-Mai; Kavanagh, Josephine; Oliver, Sandy; Thomas, James

    2015-01-01

    Background: Arguments supporting the involvement of users in research have even more weight when involving the public in systematic reviews of research. We aimed to explore the potential for public involvement in systematic reviews of observational and qualitative studies. Methods: Two consultative workshops were carried out with a group of young…

  14. Servant leadership and organizational identity: The mediating role of job involvement

    Directory of Open Access Journals (Sweden)

    Mohsen Akbari

    2014-12-01

    Full Text Available This study examines the relation between servant leadership and organizational identity and job involvement in Tax office of Guilan in Iran. One hundred and twenty two employees are participated in the study. For this purpose, a questionnaire with three parts was used. The questionnaire included three main sections, namely servant leadership, job involvement, and organizational identity. The analysis of the data obtained through the questionnaire indicated that servant leadership has significant effect on organizational identity and job involvement. Also, job involvement has positive effect on organizational identity. The findings, implications of the study, and suggestions for further research in this field are discussed in detail.

  15. Ethical, legal and social issues of genetic studies with African immigrants as research subjects.

    Science.gov (United States)

    Gong, Gordon; Kosoko-Lasaki, Sade; Haynatzki, Gleb; Cook, Cynthia; O'Brien, Richard L; Houtz, Lynne E

    2008-09-01

    There is growing interest in exploring gene-environment interactions in the etiology of diseases in immigrants from sub-Saharan Africa. Our experience working with the Sudanese immigrant population in Omaha, NE, makes clear the pressing need for geneticists and federal and local funding agencies to address the ethical, legal and social implications of genetic research with such vulnerable populations. Our work raises several questions. How does one design research with African immigrant participants to assure it is ethical? Many immigrants may not understand the purposes, risks and benefits involved in research because of low literacy rates, one of the results of civil wars, or concepts of biologic science foreign to their cultures. Is it possible to obtain truly informed consent? Do African immigrants perceive genetic research using them as subjects as racist? Is genetic research on minorities "biopiracy" or "bio-colonialism?" In our experience, some Sudanese immigrants have challenged the legality and ethics of genetic studies with profit-making as an end. We have concluded that it is essential to educate African immigrant or any other non-English-speaking immigrant participants in research using lay language and graphic illustrations before obtaining consent. Cultural proficiency is important in gaining the trust of African immigrants; profit-sharing may encourage their participation in genetic research to benefit all; involvement of African immigrant community leaders in planning, delivery and evaluation using the community-based participatory research approach will facilitate healthcare promotion, health literacy education, as well as genetic research. It is crucial to address the ethical, legal and social implications of genetic studies with African immigrants as research subjects.

  16. Getting connected: The effects of online political communication on citizens’ political involvement

    NARCIS (Netherlands)

    Kruikemeier, S.

    2014-01-01

    This dissertation examines to what extent the Internet influences citizens’ involvement in politics, by using different research methods - longitudinal survey research, content analyses and experimental studies. Three main conclusions can be drawn from this research. First, this dissertation shows

  17. Exploring the experiences of substitute decision-makers with an exception to consent in a paediatric resuscitation randomised controlled trial: study protocol for a qualitative research study.

    Science.gov (United States)

    Parker, Melissa J; de Laat, Sonya; Schwartz, Lisa

    2016-09-13

    Prospective informed consent is required for most research involving human participants; however, this is impracticable under some circumstances. The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) outlines the requirements for research involving human participants in Canada. The need for an exception to consent (deferred consent) is recognised and endorsed in the TCPS for research in individual medical emergencies; however, little is known about substitute decision-maker (SDM) experiences. A paediatric resuscitation trial (SQUEEZE) (NCT01973907) using an exception to consent process began enrolling at McMaster Children's Hospital in January 2014. This qualitative research study aims to generate new knowledge on SDM experiences with the exception to consent process as implemented in a randomised controlled trial. The SDMs of children enrolled into the SQUEEZE pilot trial will be the sampling frame from which ethics study participants will be derived. Qualitative research study involving individual interviews and grounded theory methodology. SDMs for children enrolled into the SQUEEZE pilot trial. Up to 25 SDMs. Qualitative methodology: SDMs will be invited to participate in the qualitative ethics study. Interviews with consenting SDMs will be conducted in person or by telephone, taped and professionally transcribed. Participants will be encouraged to elaborate on their experience of being asked to consent after the fact and how this process occurred. Data gathering and analysis will be undertaken simultaneously. The investigators will collaborate in developing the coding scheme, and data will be coded using NVivo. Emerging themes will be identified. This research represents a rare opportunity to interview parents/guardians of critically ill children enrolled into a resuscitation trial without their knowledge or prior consent. Findings will inform implementation of the exception to consent process in the planned definitive SQUEEZE

  18. Extent of Parental Involvement in Improving the Students' Levels in Special Education Programs in Kuwait

    Science.gov (United States)

    Al-Shammari, Zaid; Yawkey, Thomas D.

    2008-01-01

    This research study investigates the degree to which parental involvement impacts students' levels in special education programs in Kuwait. More specifically, this research discusses several scientific methods for research included within the significance of the study and research questions for this study. Research methods and results using a…

  19. Parent Involvement and Student Performance: The Influence of School Context

    Science.gov (United States)

    McNeal, Ralph B., Jr.

    2015-01-01

    Researchers focusing on parent involvement continue to concentrate their efforts on the relationship between involvement and student performance in isolation of the school context in which involvement occurs. This research outlines an ecology of involvement and how this social context affects parent involvement and student performance. Relying on…

  20. 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

  1. Associations Among Depressive Symptoms, Wellness, Patient Involvement, Provider Cultural Competency, and Treatment Nonadherence: A Pilot Study Among Community Patients Seen at a University Medical Center.

    Science.gov (United States)

    Hooper, Lisa M; Huffman, Lauren E; Higginbotham, John C; Mugoya, George C T; Smith, Annie K; Dumas, Tia N

    2018-02-01

    Treatment nonadherence is a pernicious problem associated with increasing rates of chronic diseases, escalating healthcare costs, and rising mortality in some patients. Although researchers have suggested numerous factors related to treatment nonadherence, several understudied aspects warrant attention, such as primary-care settings, provider cultural competence, and patient involvement. Adding to the research base, the present pilot study examined 88 primarily Black American and White American community patients from a large university medical center in the southern part of the United States. The study explored two research questions: (a) To what extent are there associations among depressive symptoms, wellness, patient involvement, cultural competency, and treatment nonadherence in a racially diverse community patient population? And (b) to what extent do the study exploratory variables and background characteristics predict treatment nonadherence, both separately and jointly? Depressive symptoms, the patient's perception of a provider's cultural competence, and marital/partnered status were found to be statistically significantly associated with treatment nonadherence, but not entirely in the directions expected.

  2. Service user involvement in mental health care: an evolutionary concept analysis.

    Science.gov (United States)

    Millar, Samantha L; Chambers, Mary; Giles, Melanie

    2016-04-01

    The concept of service user involvement is an evolving concept in the mental health-care literature. This study sought to explore and analyse the concept of service user involvement as used in within the field of mental health care. An evolutionary concept analysis was conducted using a literature-based sample extracted from an electronic database search. One hundred and thirty-four papers met the inclusion criteria and were analysed to discover key attributes, antecedents and consequences of service user involvement and to produce a definition of the concept. Five key attributes of service user involvement within the context of mental health care were identified: a person-centred approach, informed decision making, advocacy, obtaining service user views and feedback and working in partnership. Clarity of the attributes and definition of the concept of service user involvement aims to promote understanding of the concept among key stakeholders including mental health professionals, service users and community and voluntary organizations. The findings of the research have utility in the areas of theory and policy development, research on service user involvement in mental health care and service user involvement in mental health practice. Directions for further research regarding the concept are identified. © 2015 John Wiley & Sons Ltd.

  3. Maintaining and Researching Port Safety: A Case Study of the Port of Kaohsiung

    OpenAIRE

    Tseng, Po-Hsing.; Pilcher, Nick.

    2017-01-01

    Maintaining port safety in full conformity with IMO standards is a requisite for every port and country. To do this, understanding the challenges and human factors involved is key. To date, much research has shed valuable light on these factors and considered how to address them. One aspect that is often noted is that both maintaining port safety and researching port safety presents numerous challenges. This paper considers both these aspects in the context of a case study of port safety in K...

  4. Renal and perirenal space involvement in acute pancreatitis: An MRI study

    Energy Technology Data Exchange (ETDEWEB)

    Li, Xing Hui, E-mail: lixinghui1005@126.com [Sichuan Key Laboratory of Medical Imaging, Department of Radiology, Affiliated Hospital of North Sichuan Medical College, Nanchong 637000 (China); Zhang, Xiao Ming, E-mail: cjr.zhxm@vip.163.com [Sichuan Key Laboratory of Medical Imaging, Department of Radiology, Affiliated Hospital of North Sichuan Medical College, Nanchong 637000 (China); Ji, Yi Fan, E-mail: 526504036@qq.com [Sichuan Key Laboratory of Medical Imaging, Department of Radiology, Affiliated Hospital of North Sichuan Medical College, Nanchong 637000 (China); Jing, Zong Lin, E-mail: jzl325@163.com [Sichuan Key Laboratory of Medical Imaging, Department of Radiology, Affiliated Hospital of North Sichuan Medical College, Nanchong 637000 (China); Huang, Xiao Hua, E-mail: nc_hxh1966@yahoo.com.cn [Sichuan Key Laboratory of Medical Imaging, Department of Radiology, Affiliated Hospital of North Sichuan Medical College, Nanchong 637000 (China); Yang, Lin, E-mail: linyangmd@163.com [Sichuan Key Laboratory of Medical Imaging, Department of Radiology, Affiliated Hospital of North Sichuan Medical College, Nanchong 637000 (China); Zhai, Zhao Hua, E-mail: zhaizhaohuada@163.com [Sichuan Key Laboratory of Medical Imaging, Department of Radiology, Affiliated Hospital of North Sichuan Medical College, Nanchong 637000 (China)

    2012-08-15

    Objectives: To study the prevalence and characteristics of renal and perirenal space involvement and its relation to the severity of acute pancreatitis (AP) using MRI. Methods: 115 patients with AP who underwent MRI with the clinical kidney function test were retrospectively analyzed in this study. MRI sequences included conventional and diffusion weighted imaging (DWI) sequences. The renal and perirenal space involvement in AP was noted on MRI. The renal apparent diffusion coefficient (ADC) on DWI was measured for each kidney. The severity of AP on MRI was graded using MR severity index (MRSI). The relationships among the renal and perirenal space involvement on MRI, the renal ADC, MRSI and the results of the kidney function test were analyzed. Results: In the 115 patients with AP, the renal and perirenal space abnormalities detected included renal parenchymal abnormalities (0.8%), abnormalities of the renal collecting system (2.6%), renal vascular abnormalities (1.7%), thickened renal fascia (99%), perirenal stranding (62%) and perirenal fluid collection (40%). The prevalence of perirenal space abnormalities was correlated with the severity of AP based on MRSI (P < 0.05). The renal ADC values were lower in patients with abnormal kidney function than in those without kidney injury (P < 0.05). The prevalence of kidney function abnormalities was 9.4%, 32% and 100% in mild, moderate, and severe AP cases, respectively (P = 0.00). Conclusion: Perirenal space involvement is much more than renal parenchymal involvement in AP. The prevalence of perirenal space involvement in AP on MRI has a positive correlation with the severity of AP according to MRSI.

  5. Renal and perirenal space involvement in acute pancreatitis: An MRI study

    International Nuclear Information System (INIS)

    Li, Xing Hui; Zhang, Xiao Ming; Ji, Yi Fan; Jing, Zong Lin; Huang, Xiao Hua; Yang, Lin; Zhai, Zhao Hua

    2012-01-01

    Objectives: To study the prevalence and characteristics of renal and perirenal space involvement and its relation to the severity of acute pancreatitis (AP) using MRI. Methods: 115 patients with AP who underwent MRI with the clinical kidney function test were retrospectively analyzed in this study. MRI sequences included conventional and diffusion weighted imaging (DWI) sequences. The renal and perirenal space involvement in AP was noted on MRI. The renal apparent diffusion coefficient (ADC) on DWI was measured for each kidney. The severity of AP on MRI was graded using MR severity index (MRSI). The relationships among the renal and perirenal space involvement on MRI, the renal ADC, MRSI and the results of the kidney function test were analyzed. Results: In the 115 patients with AP, the renal and perirenal space abnormalities detected included renal parenchymal abnormalities (0.8%), abnormalities of the renal collecting system (2.6%), renal vascular abnormalities (1.7%), thickened renal fascia (99%), perirenal stranding (62%) and perirenal fluid collection (40%). The prevalence of perirenal space abnormalities was correlated with the severity of AP based on MRSI (P < 0.05). The renal ADC values were lower in patients with abnormal kidney function than in those without kidney injury (P < 0.05). The prevalence of kidney function abnormalities was 9.4%, 32% and 100% in mild, moderate, and severe AP cases, respectively (P = 0.00). Conclusion: Perirenal space involvement is much more than renal parenchymal involvement in AP. The prevalence of perirenal space involvement in AP on MRI has a positive correlation with the severity of AP according to MRSI.

  6. Attribution of human characteristics and bullying involvement in childhood: Distinguishing between targets

    NARCIS (Netherlands)

    Noorden, T.H.J. van; Haselager, G.J.T.; Lansu, T.A.M.; Cillessen, A.H.N.; Bukowski, W.M.

    2016-01-01

    This investigation researched the association between the attribution of human characteristics and bullying involvement in children by distinguishing between targets. Study 1 focused on the attribution of human characteristics by bullies, victims, bully/victims, and non-involved children toward

  7. An overview of patient involvement in healthcare decision-making: a situational analysis of the Malaysian context.

    Science.gov (United States)

    Ng, Chirk-Jenn; Lee, Ping-Yein; Lee, Yew-Kong; Chew, Boon-How; Engkasan, Julia P; Irmi, Zarina-Ismail; Hanafi, Nik-Sherina; Tong, Seng-Fah

    2013-10-11

    Involving patients in decision-making is an important part of patient-centred care. Research has found a discrepancy between patients' desire to be involved and their actual involvement in healthcare decision-making. In Asia, there is a dearth of research in decision-making. Using Malaysia as an exemplar, this study aims to review the current research evidence, practices, policies, and laws with respect to patient engagement in shared decision-making (SDM) in Asia. In this study, we conducted a comprehensive literature review to collect information on healthcare decision-making in Malaysia. We also consulted medical education researchers, key opinion leaders, governmental organisations, and patient support groups to assess the extent to which patient involvement was incorporated into the medical curriculum, healthcare policies, and legislation. There are very few studies on patient involvement in decision-making in Malaysia. Existing studies showed that doctors were aware of informed consent, but few practised SDM. There was limited teaching of SDM in undergraduate and postgraduate curricula and a lack of accurate and accessible health information for patients. In addition, peer support groups and 'expert patient' programmes were also lacking. Professional medical bodies endorsed patient involvement in decision-making, but there was no definitive implementation plan. In summary, there appears to be little training or research on SDM in Malaysia. More research needs to be done in this area, including baseline information on the preferred and actual decision-making roles. The authors have provided a set of recommendations on how SDM can be effectively implemented in Malaysia.

  8. Developing what customers really need : involving customers in innovations

    NARCIS (Netherlands)

    Weber, M.E.A.; Weggeman, M.C.D.P.; Aken, van J.E.

    2012-01-01

    Involving users in new product design and development is in itself not a new phenomenon. Academic research on the subject, however, is relatively new. Since this new millennium research on user involvement in innovations has multiplied, exhibiting that firms who actively involve users in their

  9. Using peer-mediated instruction to support communication involving a student with autism during mathematics activities: A case study.

    Science.gov (United States)

    Tan, Paulo; Alant, Erna

    2018-01-01

    This study employed an A-B singled subject design to explore the extent to which a peer-mediated intervention supported a first-grade student with autism's usage both in purpose and frequency of a speech-generating device (SGD) during mathematics activities. The intervention involved teaching a peer without a disability to encourage the student with autism to use the SGD during partnered mathematics activities. Our analysis involved visual and descriptive examination of trends and patterns over time, and comparison of means between and within phases. We found during the course of this study that (1) the student with autism's level of overall communication, which included the relevancy of these communicative behaviors, increased; (2) the student with autism's level of spontaneous communication acts increased; and (3) the peer became more independent with supporting the student with autism's communication. Implications for future research and practice are provided.

  10. Inclination towards research and the pursuit of a research career among medical students: an international cohort study.

    Science.gov (United States)

    Ha, Tam Cam; Ng, Sheryl; Chen, Cynthia; Yong, Sook Kwin; Koh, Gerald C H; Tan, Say Beng; Malhotra, Rahul; Altermatt, Fernando; Seim, Arnfinn; Biderman, Aya; Woolley, Torres; Østbye, Truls

    2018-05-02

    Involvement of clinicians in biomedical research is imperative for the future of healthcare. Several factors influence clinicians' inclination towards research: the medical school experience, exposure to research article reading and writing, and knowledge of research. This cohort study follows up medical students at time of graduation to explore changes in their inclination towards research and pursuing a research career compared to their inclination at time of entry into medical school. Students from medical schools in six different countries were enrolled in their first year of school and followed-up upon graduation in their final year. Students answered the same self-administered questionnaire at both time points. Changes in inclination towards research and pursuing a research career were assessed. Factors correlated with these changes were analysed. Of the 777 medical students who responded to the study questionnaire at entry into medical school, 332 (42.7%) completed the follow-up survey. Among these 332 students, there was no significant increase in inclination towards research or pursuing a research career over the course of their medical schooling. Students from a United States based school, in contrast to those from schools other countries, were more likely to report having research role models to guide them (51.5% vs. 0%-26.4%) and to have published in a peer-reviewed journal (75.7% vs. 8.9%-45%). Absence of a role model was significantly associated with a decrease in inclination towards research, while an increased desire to learn more about statistics was significantly associated with an increase in inclination towards pursuing a research career. Most medical students did not experience changes in their inclination towards research or pursuing a research career over the course of their medical schooling. Factors that increased their inclination to undertaking research or pursuing a research career were availability of a good role model, and a good

  11. Sensation seeking in males involved in recreational high risk sports

    OpenAIRE

    M Guszkowska; A Bołdak

    2010-01-01

    The study examined sensation seeking intensity level in males involved in recreational high risk sports and investigated whether its level depends on type of sport practised. Additionally, in case of parachutists, sport experience of study participants were scrutinised with regard to its possible impact on the level of sensation seeking.The research involved 217 males aged 17 to 45, practising recreational high risk sports, namely: parachuting (n=98); wakeboarding (n=30); snowboarding (n=30);...

  12. Gear noise, vibration, and diagnostic studies at NASA Lewis Research Center

    Science.gov (United States)

    Zakrajsek, J. J.; Oswald, F. B.; Townsend, D. P.; Coy, J. J.

    1990-01-01

    The NASA Lewis Research Center and the U.S. Army Aviation Systems Command are involved in a joint research program to advance the technology of rotorcraft transmissions. This program consists of analytical as well as experimental efforts to achieve the overall goals of reducing weight, noise, and vibration, while increasing life and reliability. Recent analytical activities are highlighted in the areas of gear noise, vibration, and diagnostics performed in-house and through NASA and U.S. Army sponsored grants and contracts. These activities include studies of gear tooth profiles to reduce transmission error and vibration as well as gear housing and rotordynamic modeling to reduce structural vibration and transmission and noise radiation, and basic research into current gear failure diagnostic methodologies. Results of these activities are presented along with an overview of near-term research plans in the gear noise, vibration, and diagnostics area.

  13. Hypnosis, hypnotic suggestibility, memory, and involvement in films.

    Science.gov (United States)

    Maxwell, Reed; Lynn, Steven Jay; Condon, Liam

    2015-05-01

    Our research extends studies that have examined the relation between hypnotic suggestibility and experiential involvement and the role of an hypnotic induction in enhancing experiential involvement (e.g., absorption) in engaging tasks. Researchers have reported increased involvement in reading (Baum & Lynn, 1981) and music-listening (Snodgrass & Lynn, 1989) tasks during hypnosis. We predicted a similar effect for film viewing: greater experiential involvement in an emotional (The Champ) versus a non-emotional (Scenes of Toronto) film. We tested 121 participants who completed measures of absorption and trait dissociation and the Harvard Group Scale of Hypnotic Susceptibility and then viewed the two films after either an hypnotic induction or a non-hypnotic task (i.e., anagrams). Experiential involvement varied as a function of hypnotic suggestibility and film clip. Highly suggestible participants reported more state depersonalization than less suggestible participants, and depersonalization was associated with negative affect; however, we observed no significant correlation between hypnotic suggestibility and trait dissociation. Although hypnosis had no effect on memory commission or omission errors, contrary to the hypothesis that hypnosis facilitates absorption in emotionally engaging tasks, the emotional film was associated with more commission and omission errors compared with the non-emotional film. Copyright © 2014 Elsevier Inc. All rights reserved.

  14. Study of the Genes and Mechanism Involved in the Radioadaptive Response

    Science.gov (United States)

    Dasgupta, Pushan R.

    2009-01-01

    The radioadaptive response is a phenomenon where exposure to a prior low dose of radiation reduces the level of damage induced by a subsequent high radiation dose. The molecular mechanism behind this is still not well understood. Learning more about the radioadaptive response is critical for long duration spaceflight since astronauts are exposed to low levels of cosmic radiation. The micronucleus assay was used to measure the level of damage caused by radiation. Although cells which were not washed with phosphate buffered saline (PBS) after a low priming dose of 5cGy did not show adaptation to the challenge dose, washing the cells with PBS and giving the cells fresh media after the low dose did allow radioadaptation to occur. This is consistent with the results of a previous publication by another research group. In the present study, genes involved in DNA damage signaling and the oxidative stress response were studied using RT PCR techniques in order to look at changes in expression level after the low dose with or without washing. Our preliminary results indicate that upregulation of oxidative stress response genes ANGPTL7, NCF2, TTN, and SRXN1 may be involved in the radioadaptive response. The low dose of radiation alone was found to activate the oxidative stress response genes GPR156 and MTL5, whereas, washing the cells alone caused relatively robust upregulation of the oxidative stress response genes DUSP1 and PTGS2. Washing after the priming dose showed some changes in the expression level of several DNA damage signaling genes. In addition, we studied whether washing the cells after the priming dose has an effect on the level of nitric oxide in both the media and cells, since nitric oxide levels are known to increase in the media of the cells after a high dose of radiation only if the cells were already exposed to a low priming dose. Based on this preliminary study, we propose that washing the cells after priming exposure actually eliminates some factor

  15. Maximising value from a United Kingdom Biomedical Research Centre: study protocol.

    Science.gov (United States)

    Greenhalgh, Trisha; Ovseiko, Pavel V; Fahy, Nick; Shaw, Sara; Kerr, Polly; Rushforth, Alexander D; Channon, Keith M; Kiparoglou, Vasiliki

    2017-08-14

    Biomedical Research Centres (BRCs) are partnerships between healthcare organisations and universities in England. Their mission is to generate novel treatments, technologies, diagnostics and other interventions that increase the country's international competitiveness, to rapidly translate these innovations into benefits for patients, and to improve efficiency and reduce waste in healthcare. As NIHR Oxford BRC (Oxford BRC) enters its third 5-year funding period, we seek to (1) apply the evidence base on how best to support the various partnerships in this large, multi-stakeholder research system and (2) research how these partnerships play out in a new, ambitious programme of translational research. Organisational case study, informed by the principles of action research. A cross-cutting theme, 'Partnerships for Health, Wealth and Innovation' has been established with multiple sub-themes (drug development, device development, business support and commercialisation, research methodology and statistics, health economics, bioethics, patient and public involvement and engagement, knowledge translation, and education and training) to support individual BRC research themes and generate cross-theme learning. The 'Partnerships' theme will support the BRC's goals by facilitating six types of partnership (with patients and citizens, clinical services, industry, across the NIHR infrastructure, across academic disciplines, and with policymakers and payers) through a range of engagement platforms and activities. We will develop a longitudinal progress narrative centred around exemplar case studies, and apply theoretical models from innovation studies (Triple Helix), sociology of science (Mode 2 knowledge production) and business studies (Value Co-creation). Data sources will be the empirical research studies within individual BRC research themes (who will apply separately for NHS ethics approval), plus documentary analysis and interviews and ethnography with research

  16. Consumer involvement in oral nutritional supplements purchasing behavior

    Directory of Open Access Journals (Sweden)

    Dwi Meilia Fitriyani

    2017-06-01

    Full Text Available The paper aimed to get insight of consumer involvement in purchasing behavior towards ONS (Oral Nutritional Supplements for children. By implementing an online survey with sample size of 100, the research investigated the factors (motivation and stimulus factor influencing consumer involvement and the causality between consumer involvement with the product knowledge as well as purchasing behavior. The research tool used was a 5-points Likert questionnaire in which respondents were asked to show their agreements about 40 items of 5 constructs. A partial least square - structural equation modeling by Smart-PLS software used to test the model. The results of this research also comes to conclusion that motivation and stimulus factor had significant affects on consumer involvement, consumer involvement had significant influence to product knowledge as well as ONS purchasing behavior, however product knowledge did not have significant affects on purchasing behavior. The results also showed that the product involvement has an important influence on consumers behavior.

  17. Experiences, attitudes and barriers towards research amongst junior faculty of Pakistani medical universities

    Directory of Open Access Journals (Sweden)

    Kauser Samreen

    2009-11-01

    Full Text Available Abstract Background The developing world has had limited quality research and in Pakistan, research is still in its infancy. We conducted a study to assess the proportion of junior faculty involved in research to highlight their attitude towards research, and identify the factors associated with their research involvement. Methods A cross-sectional study was conducted in four medical universities/teaching hospitals in Pakistan, representing private and public sectors. A pre-tested, self-administered questionnaire was used to collect information from 176 junior faculty members of studied universities/hospitals. Logistic regression analysis was used to identify factors related to attitudes and barriers in research among those currently involved in research with those who were not. Results Overall, 41.5% of study subjects were currently involved in research. A highly significant factor associated with current research involvement was research training during the post-graduate period (p Conclusion Less than half of the study participants were currently involved in research. Research output may improve if identified barriers are rectified. Further studies are recommended in this area.

  18. Researching health inequalities with Community Researchers: practical, methodological and ethical challenges of an 'inclusive' research approach.

    Science.gov (United States)

    Salway, Sarah; Chowbey, Punita; Such, Elizabeth; Ferguson, Beverly

    2015-01-01

    Public health research sometimes uses members of communities as researchers. These are called Community Researchers. The advantage of using Community Researchers is that it enables people who live in communities to participate in research by designing the research, gathering data and being involved in analysis. This 'participatory' approach also has the potential to reach communities that might otherwise not be included in research. There are few studies that report the experiences of Community Researchers who take part in such research. This study helps fill this gap by exploring the issues and challenges faced by Community Researchers involved in a study of health and poverty in ethnically mixed areas of east London, UK. Through the accounts of 12 researchers, the study reveals that being a community 'insider' had advantages: many felt they had been able to gain the trust of respondents and access people for the research that would have otherwise been missed. The role of Community Researcher was, however, difficult to manage with some researchers feeling burdened by their role and the increased knowledge they had about the lives of those in their community. In addition to the personal challenges for the Community Researchers, the findings raise various ethical and methodological issues that need consideration in participatory research. Background Inclusive research approaches are increasingly employed by public health researchers. Recent methodological development includes the engagement of Community Researchers (CRs), who use their knowledge and networks to facilitate research with the community with which they identify. Few studies have explored the experiences of CRs in the research process, an important element of any comprehensive assessment of the pros and cons of such research endeavours. We report here on the experiences of CRs engaged in a study of health inequalities and poverty in ethnically diverse and disadvantaged areas of London, UK. Methods We

  19. Adolescents' Psychological Well-Being and Perceived Parental Involvement: Implications for Parental Involvement in Middle Schools

    Science.gov (United States)

    Cripps, Kayla; Zyromski, Brett

    2009-01-01

    Adolescence is a critical period of development. Previous research suggests parent involvement in school directly impacts student success. However, different types of parental involvement and the efforts of middle school personnel to educate parents about these effective practices have received scant attention in the literature. The level and type…

  20. 76 FR 44512 - Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing...

    Science.gov (United States)

    2011-07-26

    ... regulatory requirements that can apply to a single research study have been criticized as complex... research studies, as follows: 1. The highest level of review, applied to most studies involving more than... long-range effects of applying knowledge gained in the research (for example, the possible effects of...

  1. Counselling needs of students involved in indiscipline as expressed ...

    African Journals Online (AJOL)

    This study therefore examined the counselling needs of students involved in indiscipline as expressed by teachers. The descriptive research design was adopted and a simple random sampling technique was employed in selecting the respondents for the study. Data analysis was carried out using descriptive and inferential ...

  2. IDEA and Family Involvement

    Directory of Open Access Journals (Sweden)

    Mehmet Emin Öztürk

    2017-01-01

    Full Text Available Individuals with Disabilities Education Act (IDEA gives many rights to parents with special needs in terms of involvement and participation. Given the importance of family involvement in the special education process, and federal legislation that increasingly mandated and supported such involvement over time, considerable research has focused on the multiple ways that relationships between schools and families in the special education decision making process have played out. Educational professionals should create a positive climate for CLD families so that they feel more comfortable and therefore are able to participate more authentically and meaningfully.

  3. The contribution of case study design to supporting research on Clubhouse psychosocial rehabilitation.

    Science.gov (United States)

    Raeburn, Toby; Schmied, Virginia; Hungerford, Catherine; Cleary, Michelle

    2015-10-01

    Psychosocial Clubhouses provide recovery-focused psychosocial rehabilitation to people with serious mental illness at over 300 sites in more than 30 countries worldwide. To deliver the services involved, Clubhouses employ a complex mix of theory, programs and relationships, with this complexity presenting a number of challenges to those undertaking Clubhouse research. This paper provides an overview of the usefulness of case study designs for Clubhouse researchers; and suggests ways in which the evaluation of Clubhouse models can be facilitated. The paper begins by providing a brief explanation of the Clubhouse model of psychosocial rehabilitation, and the need for ongoing evaluation of the services delivered. This explanation is followed by an introduction to case study design, with consideration given to the way in which case studies have been used in past Clubhouse research. It is posited that case study design provides a methodological framework that supports the analysis of either quantitative, qualitative or a mixture of both types of data to investigate complex phenomena in their everyday contexts, and thereby support the development of theory. As such, case study approaches to research are well suited to the Clubhouse environment. The paper concludes with recommendations for future Clubhouse researchers who choose to employ a case study design. While the quality of case study research that explores Clubhouses has been variable in the past, if applied in a diligent manner, case study design has a valuable contribution to make in future Clubhouse research.

  4. Student Involvement in Wellness Policies: A Study of Pennsylvania Local Education Agencies

    Science.gov (United States)

    Jomaa, Lamis H.; McDonnell, Elaine; Weirich, Elaine; Hartman, Terryl; Jensen, Leif; Probart, Claudia

    2010-01-01

    Objective: Explore student-involvement goals in local wellness policies (LWPs) of local education agencies (LEAs) in Pennsylvania (PA) and investigate associations with LEA characteristics. Design: An observational study that helped examine student-involvement goals. Setting: Public PA LEAs. Participants: LWPs submitted by 539 PA public LEAs. Main…

  5. Involvement in Childrearing and Mothers' and Fathers' Adjustment

    Science.gov (United States)

    Riina, Elizabeth M.; Feinberg, Mark E.

    2012-01-01

    Combining social construction of gender and equity perspectives on parents' division of labor, this study extended research on associations between parents' childrearing involvement and adjustment by (a) differentiating between types of childrearing activities (task focused vs. relationship focused), (b) examining patterns of differences in these…

  6. Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: a cross-country qualitative study.

    Science.gov (United States)

    Lempp, H; Abayneh, S; Gurung, D; Kola, L; Abdulmalik, J; Evans-Lacko, S; Semrau, M; Alem, A; Thornicroft, G; Hanlon, C

    2018-02-01

    The aims of this paper are to: (i) explore the experiences of involvement of mental health service users, their caregivers, mental health centre heads and policy makers in mental health system strengthening in three low- and middle-income countries (LMICs) (Ethiopia, Nepal and Nigeria); (ii) analyse the potential benefits and barriers of such involvement; and (iii) identify strategies required to achieve greater service user and caregiver participation. A cross-country qualitative study was conducted, interviewing 83 stakeholders of mental health services. Our analysis showed that service user and caregiver involvement in the health system strengthening process was an alien concept for most participants. They reported very limited access to direct participation. Stigma and poverty were described as the main barriers for involvement. Several strategies were identified by participants to overcome existing hurdles to facilitate service user and caregiver involvement in the mental health system strengthening process, such as support to access treatment, mental health promotion and empowerment of service users. This study suggests that capacity building for service users, and strengthening of user groups would equip them to contribute meaningfully to policy development from informed perspectives. Involvement of service users and their caregivers in mental health decision-making is still in its infancy in LMICs. Effective strategies are required to overcome existing barriers, for example making funding more widely available for Ph.D. studies in participatory research with service users and caregivers to develop, implement and evaluate approaches to involvement that are locally and culturally acceptable in LMICs.

  7. Means-end chains for low involvement products: A study of Danish consumers' cognitions regarding different applications of vegetable oil

    DEFF Research Database (Denmark)

    Bech-Larsen, Tino; Nielsen, Niels Asger; Grunert, Klaus G.

    value maps', which are normally used for analysing laddering data, have been criticised for being questionable representations of raw data. 3. This paper reports on a study in which laddering was used to measure means-end chains for a low involvement product (vegetable oil), explicitly controlling....... 2. Some of the critique relates to the use of laddering with low involvement products, neglect of the situational factor when making laddering interviews, and the lack of a link from means-ends chains to constructs which are closer to the actual behaviour of consumers. Furthermore 'hierarchical...... for the situation. Also, a possible way of linking means-ends data to overall product perceptions and alternat the 'hierarchical value map' analysis are presented. 4. The study presented is part of the Danish research project Rape seed oil for human consumption. Although modern Danish rape seed oil has nutritional...

  8. The effects of stakeholder involvement on perceptions of an evaluation's credibility.

    Science.gov (United States)

    Jacobson, Miriam R; Azzam, Tarek

    2018-06-01

    This article presents a study of the effects of stakeholder involvement on perceptions of an evaluation's credibility. Crowdsourced members of the public and a group of educational administrators read a description of a hypothetical program and two evaluations of the program: one conducted by a researcher and one conducted by program staff (i.e. program stakeholders). Study participants were randomly assigned versions of the scenario with different levels of stakeholder credibility and types of findings. Results showed that both samples perceived the researcher's evaluation findings to be more credible than the program staff's, but that this difference was significantly reduced when the program staff were described to be highly credible. The article concludes with implications for theory and research on evaluation dissemination and stakeholder involvement. Copyright © 2018 Elsevier Ltd. All rights reserved.

  9. 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

  10. Understanding Teachers' Perspectives of Factors That Influence Parental Involvement Practices in Special Education in Barbados

    Science.gov (United States)

    Blackman, Stacey; Mahon, Erin

    2016-01-01

    Parental involvement has been defined in various ways by researchers and is reported to have many advantages for children's education. The research utilises a case study strategy to investigate teachers' perspectives of parental involvement at four case sites in Barbados. In-depth interviews were done with teachers and analysis utilised content…

  11. Interaction Involvement: A Cognitive Dimension of Communicative Competence.

    Science.gov (United States)

    Cegala, Donald J.

    1981-01-01

    Presents a conceptual and operational definition of one cognitive dimension of communicative competence--interaction involvement--based on Goffman's model of face-to-face society. Reports two studies to support the validity of the definition. Outlines the implications for future research on communicative competence as well as instructional…

  12. Psychosocial factors as predictors of job involvement among ...

    African Journals Online (AJOL)

    The predictive influence of incentives, staff discipline, religiosity, self-esteem, and length of service on job involvement among secondary school teachers was examined in this study. A descriptive research design was employed and data was collected through a structured questionnaire. Eighty (80) teachers comprising of ...

  13. Psychosocial impact of involvement in the Special Olympics.

    Science.gov (United States)

    Crawford, Clare; Burns, Jan; Fernie, Bruce A

    2015-01-01

    Existing evidence suggests that people with intellectual disabilities are vulnerable to low self-esteem leading to additional psychosocial issues such as social exclusion and stress. Previous research into the involvement of Special Olympics (SO) of people with intellectual disabilities has indicted positive psychosocial outcomes. Involvement in sport is known generally to have psychological and social benefits. This study aimed to compare the psychosocial impact of involvement in sport through the SO to no or limited sports involvement, for a sample of people with intellectual disabilities. A cross sectional design was employed comparing three groups, SO, Mencap Sports, and Mencap No Sports on the variables: Self-esteem, quality of life, stress levels and social networks. One hundred and one participants were recruited either through the SO or Mencap. Data were collected through the completion of validated questionnaires by one to one interviews with the participants. Analysis revealed that self-esteem, quality of life, and stress were all significantly associated with SO involvement. Logistic regression analysis was used to explore whether scores on these variables were able to predict group membership. Self-esteem was found to be a significant predictor of group membership, those in the SO having the highest self-esteem. The findings provide further evidence of a positive association between sport involvement and increased psychological wellbeing, especially for those involved in the SO. The implications of these findings for practice and future research into the relationship between sport and psychological wellbeing within the learning disabled population are considered. Copyright © 2015 Elsevier Ltd. All rights reserved.

  14. A pilot study of neurointerventional research level of evidence and collaboration.

    Science.gov (United States)

    Fargen, Kyle M; Mocco, J; Spiotta, Alejandro M; Rai, Ansaar; Hirsch, Joshua A

    2017-07-01

    No studies have sought to provide a quantitative or qualitative critique of research in the field of neurointerventional surgery. To analyze recent publications from the Journal of Neurointerventional Surgery ( JNIS ) to test a new method for assessing research and collaboration. We reviewed all JNIS Online First publications from 25 February 2015 to 24 February 2016. All publications-human or non-human research, systematic reviews, meta-analyses, or literature reviews-were included; editorials and commentaries were excluded. For each publication, study design, number of patients, authors, contributing centers, and study subject were recorded. Level of evidence was defined using a new scale. A total of 206 articles met inclusion criteria. Only 4% were prospective studies. Twenty-eight per cent of scientific research featured patient series of nine or less. The majority of publications were categorized as low-level evidence (91%). Forty-seven per cent involved individuals from a single center, with 87% having collaboration from three or fewer centers. International collaboration was present in 19%. While 256 institutions from 31 countries were represented, 66% were represented in only one publication. We queried JNIS Online First articles from a 1-year period in a pilot study to test a new method of analyzing research quality and collaboration. The methodology appears to adequately quantify the studies into evidence tiers that emulate previously published, widely accepted scales. This may be useful for future comparison of peer-reviewed journals or for studying the quality of research being performed in different disease processes or medical specialties. 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/.

  15. STUDY OF CARDIAC INVOLVEMENT IN DIPHTHERIA

    Directory of Open Access Journals (Sweden)

    Bala Raju Gundam

    2016-07-01

    Full Text Available BACKGROUND Diphtheria still endemic in many developing countries and is responsible for high case fatality. Myocardial involvement is a serious complication of diphtheria and diphtheria myocarditis frequently complicated by arrhythmias causes sudden death if not managed properly. So, early and adequate administration of Anti-Diphtheritic Serum (ADS and frequent monitoring particularly 24 hrs. ECG monitoring is helpful to detect any serious cardiac arrhythmias. METHODS A prospective study on patients who were culture positive diagnosed on the basis of WHO definition were treated and analysed in respect to homographic details, immunisation strategy, and clinical features with particular attention to myocarditis. RESULTS In the study, common age group affected by diphtheria was 5 to 10 years. Incidence of myocarditis more in same age group. Out of 64 patients with myocarditis, 23 patients died. CONCLUSION Incidence of diphtheria has increased in the recent years. Commonly effected age group is 5 to 10 years and most of them are presented with asymptomatic myocarditis. Symptomatic diphtheritic myocarditis has high mortality rate even with aggressive management. Patient who presented with either LBBB alone are with combination of other conduction of abnormalities has high mortality rate.

  16. Effective home-school partnership: Some strategies to help strengthen parental involvement

    Directory of Open Access Journals (Sweden)

    Chinedu I Okeke

    2014-03-01

    Full Text Available The primary aim of the study from which this paper derives was to investigate the level of parental involvement in the schooling of their children. The study employed a descriptive case study research design. All data were based on unstructured interviews with the 30 parents whose children attended one of the primary schools located in the London area of England, United Kingdom. The results of the study showed that parents care about their children's education, and want to get involved. However, results also showed that most parents do not always know how to get involved, and some are even intimidated by the operational structures within the school. The study concludes that to effectively involve parents in the affairs of the school, as well as in their children's education, certain strategies must be popularised within the school. It is recommended that parents be made aware of the strategies for their involvement in children's education if such strategies are to be effective.

  17. Gang Membership and Drug Involvement: Untangling the Complex Relationship

    Science.gov (United States)

    Bjerregaard, Beth

    2010-01-01

    Previous research has consistently demonstrated a relationship between gang membership and involvement in illegal substances. In addition, researchers have noted that gang members are frequently more heavily involved in drug sales, which often lead to increases in violent behaviors. Most of this research, however, is either cross-sectional or…

  18. Synovial membrane involvement in osteoarthritic temporomandibular joints - A light microscopic study

    NARCIS (Netherlands)

    Dijkgraaf, LC; Liem, RSB; deBont, LGM

    Objective. To study the light microscopic characteristics of the synovial membrane of osteoarthritic temporomandibular joints to evaluate synovial membrane involvement in the osteoarthritic process. Study design. Synovial membrane biopsies were obtained during unilateral arthroscopy in 40 patients.

  19. A study of muscle involvement in scrub typhus.

    Science.gov (United States)

    Kalita, Jayantee; Misra, Usha K; Mani, Vinita E; Mahadevan, Anita; Shankar, Susrala K

    2015-01-15

    Patients with scrub typhus often complain of myalgia, but a comprehensive study on muscle dysfunction is lacking. We therefore report the clinical, electromyographic and muscle biopsy findings in patients with scrub typhus. Consecutive patients with scrub typhus were included, and their clinical and laboratory findings were noted. The patients with myalgia or weakness and elevated serum creatine kinase (CK) were considered to have muscle involvement. Electromyography (EMG) and muscle biopsy were done in some patients. Patients were treated with doxycycline 200mg daily for 7 days, and their clinical and biochemical outcome on discharge and one month were evaluated. 13 out of 33 (39.4%) patients had muscle involvement and their CK levels ranged between 287 and 3166 (859 ± 829) U/L. EMG revealed short duration polyphasic potentials, and muscle histopathology revealed evidence of vasculitis. There were significant correlations between severity of weakness and CK levels (r = -0.6; p scrub typhus. Although muscle histopathology showed evidence of vasculitis, patients responded to doxycycline. Copyright © 2014 Elsevier B.V. All rights reserved.

  20. Engaging families in physical activity research: a family-based focus group study.

    Science.gov (United States)

    Brown, Helen Elizabeth; Schiff, Annie; van Sluijs, Esther M F

    2015-11-25

    Family-based interventions present a much-needed opportunity to increase children's physical activity levels. However, little is known about how best to engage parents and their children in physical activity research. This study aimed to engage with the whole family to understand how best to recruit for, and retain participation in, physical activity research. Families (including a 'target' child aged between 8 and 11 years, their parents, siblings, and others) were recruited through schools and community groups. Focus groups were conducted using a semi-structured approach (informed by a pilot session). Families were asked to order cards listing the possible benefits of, and the barriers to, being involved in physical activity research and other health promotion activities, highlighting the items they consider most relevant, and suggesting additional items. Duplicate content analysis was used to identify transcript themes and develop a coding frame. Eighty-two participants from 17 families participated, including 17 'target' children (mean age 9.3 ± 1.1 years, 61.1% female), 32 other children and 33 adults (including parents, grandparents, and older siblings). Social, health and educational benefits were cited as being key incentives for involvement in physical activity research, with emphasis on children experiencing new things, developing character, and increasing social contact (particularly for shy children). Children's enjoyment was also given priority. The provision of child care or financial reward was not considered sufficiently appealing. Increased time commitment or scheduling difficulties were quoted as the most pertinent barriers to involvement (especially for families with several children), but parents commented these could be overcome if the potential value for children was clear. Lessons learned from this work may contribute to the development of effective recruitment and retention strategies for children and their families. Making the wide

  1. Doing Research Inclusively: Bridges to Multiple Possibilities in Inclusive Research

    Science.gov (United States)

    Nind, Melanie; Vinha, Hilra

    2014-01-01

    This article reports on a study of how people do research that matters to people with learning disabilities and that involves them and their views and experiences. The study was an attempt to bring together people doing inclusive research so that, collectively, we could take stock of our practices. This would add to the individual reports and…

  2. Consumer involvement in oral nutritional supplements purchasing behavior

    OpenAIRE

    Fitriyani, Dwi Meilia; Yuliati, Lilik Noor; Simanjuntak, Megawati

    2017-01-01

    The paper aimed to get insight of consumer involvement in purchasing behavior towards ONS (Oral Nutritional Supplements) for children. By implementing an online survey with sample size of 100, the research investigated the factors (motivation and stimulus factor) influencing consumer involvement and the causality between consumer involvement with the product knowledge as well as purchasing behavior. The research tool used was a 5-points Likert questionnaire in which respondents were asked to ...

  3. Recruiting patients as partners in health research: a qualitative descriptive study.

    Science.gov (United States)

    Vat, Lidewij Eva; Ryan, Devonne; Etchegary, Holly

    2017-01-01

    Increasingly, funders and researchers want to partner with patients in health research, but it can be challenging for researchers to find patient partners. More than taking part in research as participants, patient partners help design, carry out and manage research projects. The goal of this study was to describe ways that patient partners have been recruited by researchers and patient engagement leads (individuals within organizations responsible for promoting and supporting patients as research partners). We talked with researchers and patient engagement leads in Canada and the United Kingdom, as well as a patient representative. We found three ways that could help researchers and patients find each other. One way is a case-by-case basis, where patients are often sought with experience of a health condition that is the focus of the research. The other ways involved directories where projects were posted and could be found by patients and researchers, or a third party matched patients with research projects. We found four recruitment strategies:Social marketingCommunity outreachHealth systemPartnering with other organizations (e.g., advocacy groups) There are many influences on finding, selecting and retaining patient partners: patient characteristics, the local setting, the opportunity, work climate, education and support. We hope study results will provide a useful starting point for research teams in recruiting their patient partners. Background Patient engagement in clinical trials and other health research continues to gain momentum. While the benefits of patient engagement in research are emerging, relatively little is known about recruiting patients as research partners. The purpose of this study was to describe recruitment strategies and models of recruiting patients as partners in health research. Methods Qualitative descriptive study. Thirteen patient engagement leads and health researchers from Canada and the United Kingdom, as well as one patient

  4. Characteristics of nursing studies in diabetes research published over three decades in Sweden, Norway, Denmark and Iceland

    DEFF Research Database (Denmark)

    Iversen, Marjolein M; Graue, Marit; Leksell, Janeth

    2015-01-01

    Similarities and differences across borders of Nordic countries constitute a suitable context for investigating and discussing factors related to the development of diabetes nursing research over the last three decades. The present study reviewed the entire body of contemporary diabetes nursing r...... intervention designs and a mix of research methods will enrich the research....... research literature originating in four Nordic countries: Norway, Sweden, Denmark and Iceland. Our aims were (i) to catalogue and characterise trends in research designs and research areas of these studies published over time and (ii) to describe how research involving nurses in Nordic countries has......Similarities and differences across borders of Nordic countries constitute a suitable context for investigating and discussing factors related to the development of diabetes nursing research over the last three decades. The present study reviewed the entire body of contemporary diabetes nursing...

  5. Should we feed back research results in the midst of a study?

    Directory of Open Access Journals (Sweden)

    Estabrooks Carole A

    2012-09-01

    Full Text Available Abstract Background This report is an introduction to a series of three research papers that describe the evolution of the approaches taken by the Translating Research in Elder Care (TREC research team during its first four years to feed back the research findings to study participants. TREC is an observational multi-method health services research project underway in 36 nursing homes in the prairie provinces of Canada. TREC has actively involved decision makers from the sector in all stages from initial planning, through data collection to dissemination activities. However, it was not planned as a fully integrated knowledge translation project. These three papers describe our progress towards fully integrated knowledge translation—with respect to timely and requested feedback processes. The first paper reports on the process and outcomes of creating and evaluating the feedback of research findings to healthcare aides (unregulated health professionals. These aides provide over 80% of the direct care in our sample and actively requested the feedback as a condition of their continued cooperation in the data acquisition process. The second paper describes feedback from nursing home administrators on preliminary research findings (a facility annual report and evaluation of the reports’ utility. The third paper discusses an approach to providing a more in-depth form of feedback (expanded feedback report at one of the TREC nursing homes. Findings Survey and interview feedback from healthcare aides is presented in the first paper. Overall, healthcare aides’ opinions about presentation of the feedback report and the understand ability, usability, and usefulness of the content were positive. The second paper describes the use of telephone interviews with facility administrators and indicates that the majority of contextual areas (e.g., staff job satisfaction addressed in facility annual report to be useful, meaningful, and understandable. More than

  6. Using TPCK as a Lens to Study the Practices of Math and Science Teachers Involved in a Year-Long Technology Integration Initiative

    Science.gov (United States)

    Dawson, Kara; Ritzhaupt, Albert; Liu, Feng; Rodriguez, Prisca; Frey, Christopher

    2013-01-01

    The purpose of this study was to examine the ways teachers enact technological, pedagogical and content practices in math and science lessons and to document the change with teachers involved in a year-long technology integration initiative. Six hundred seventy-two lessons were analyzed in this research using Technological, Pedagogical Content…

  7. Communicating Qualitative Research Study Designs to Research Ethics Review Boards

    Science.gov (United States)

    Ells, Carolyn

    2011-01-01

    Researchers using qualitative methodologies appear to be particularly prone to having their study designs called into question by research ethics or funding agency review committees. In this paper, the author considers the issue of communicating qualitative research study designs in the context of institutional research ethics review and offers…

  8. Portraiture of constructivist parental involvement: A model to develop a community of practice

    Science.gov (United States)

    Dignam, Christopher Anthony

    This qualitative research study addressed the problem of the lack of parental involvement in secondary school science. Increasing parental involvement is vital in supporting student academic achievement and social growth. The purpose of this emergent phenomenological study was to identify conditions required to successfully construct a supportive learning environment to form partnerships between students, parents, and educators. The overall research question in this study investigated the conditions necessary to successfully enlist parental participation with students during science inquiry investigations at the secondary school level. One hundred thirteen pairs of parents and students engaged in a 6-week scientific inquiry activity and recorded attitudinal data in dialogue journals, questionnaires, open-ended surveys, and during one-one-one interviews conducted by the researcher between individual parents and students. Comparisons and cross-interpretations of inter-rater, codified, triangulated data were utilized for identifying emergent themes. Data analysis revealed the active involvement of parents in researching with their child during inquiry investigations, engaging in journaling, and assessing student performance fostered partnerships among students, parents, and educators and supported students' social skills development. The resulting model, employing constructivist leadership and enlisting parent involvement, provides conditions and strategies required to develop a community of practice that can help effect social change. The active involvement of parents fostered improved efficacy and a holistic mindset to develop in parents, students, and teachers. Based on these findings, the interactive collaboration of parents in science learning activities can proactively facilitate a community of practice that will assist educators in facilitating social change.

  9. Gendered negotiations for research participation in community-based studies: implications for health research policy and practice

    OpenAIRE

    Kamuya, Dorcas M; Molyneux, Catherine S; Theobald, Sally

    2017-01-01

    There is a growing literature documenting the complex realities of consent processes in the field, and the negotiations and ethical dilemmas involved. Much has also been written about how gender and power shape household decision-making processes. However, these bodies of literature have rarely been brought together to inform research theory and practice in low-income settings. In this paper, qualitative research (observation, focus group discussions and interviews) were used alongside large ...

  10. Violence, victimization, criminal justice involvement, and substance use among drug-involved men.

    Science.gov (United States)

    Golder, Seana; Logan, T K

    2014-01-01

    This research identified three subgroups of drug-involved men based on severity of self-reported violence perpetration against intimate or nonintimate partners among a sample of 148 men selected from a subsample of participants in the Kentucky National Institute on Drug Abuse (NIDA) AIDS Cooperative Agreement. Men in the No Violence group accounted for approximately 19% of the total respondents, men in the Moderate Violence Severity and Extreme Violence Severity groups comprises 56% and 25% of the sample, respectively. Men in the Extreme Violence Severity group experienced significantly more psychological victimization as children and more frequent physical childhood abuse than did their peers. Men in the Extreme Violence Severity group reported having earlier involvement in the criminal justice system and lawbreaking behavior; they also reported higher frequency of marijuana and crack use. Implications for treatment and future research are presented.

  11. The perspective of European researchers of national occupational safety and health institutes for contributing to a European research agenda: a modified Delphi study

    Science.gov (United States)

    Gagliardi, Diana; Rondinone, Bruna M; Mirabile, Marco; Buresti, Giuliana; Ellwood, Peter; Hery, Michel; Paszkiewicz, Peter; Valenti, Antonio; Iavicoli, Sergio

    2017-01-01

    Objectives This study, developed within the frame of the Partnership for European Research on Occupational Safety and Health joint research activities and based on the frame designed by the 2013 European Agency for Safety and Health at Work (EU-OSHA) study, is the first example of using the points of view of European occupational safety and health (OSH) researchers. The objective is to identify priorities for OSH research that may contribute to the achievement of present and future sustainable growth objectives set by the European strategies. Methods The study was carried out using a modified Delphi method with a two-round survey. Each round involved a panel of about 110 researchers representing the network member institutes was selected according to specific criteria, including the ownership of research expertise in at least one of the four macroareas identified by the reference report developed by EU-OSHA in 2013. Results The study identified some innovative research topics (for example, ‘Emerging technological devices’ and ‘OSH consequences of markets integration’) and research priorities (ie, crowdsourcing, e-work, zero-hours contracts) that are not reflected in previous studies of this nature. The absence of any reference to violence and harassment at work among the researchers’ proposals is a major difference from previous similar studies, while topics related to gender issues and electromagnetic fields show a lower importance. Conclusions The innovative design of a research priorities identification process, which takes advantage of a large, representative and qualified panel of European researchers allowed the definition of a number of research priorities able to support the inclusion of innovative OSH research issues in the scope of the next European research agenda. PMID:28645965

  12. Managing Supplier Involvement in New Product Development: A Multiple-Case Study

    NARCIS (Netherlands)

    F.E.A. van Echtelt (Ferrie); J.Y.F. Wynstra (Finn); A.J. van Weele (Arjan); G.M. Duysters (Geert)

    2006-01-01

    textabstractExisting studies of supplier involvement in new product development have mainly focused on project-related short-term processes and success-factors. This study validates and extends an existing exploratory framework, which comprises both long-term strategic processes and short-term

  13. Managing supplier involvement in new product development : a multiple-case study

    NARCIS (Netherlands)

    Echtelt, van F.E.A.; Wynstra, J.Y.F.; Weele, van A.J.; Duysters, G.M.

    2008-01-01

    Existing studies of supplier involvement in new product development have mainly focused on project-related short-term processes and success factors. This study validates and extends an existing exploratory framework, which comprises both long-term strategic processes and short-term operational

  14. Future research: a prospective longitudinal study of elder self-neglect.

    Science.gov (United States)

    Dyer, Carmel Bitondo; Franzini, Luisa; Watson, Mary; Sanchez, Luis; Prati, Laura; Mitchell, Stacy; Wallace, Robert; Pickens, Sabrina

    2008-11-01

    In almost every U.S. jurisdiction, elder self-neglect is the most common allegation addressed by Adult Protective Service (APS) agencies. Not only is self-neglect common, but this form of mistreatment is an independent risk factor for death. A lack of understanding of the precipitating factors and root causes and of the effect on social and medical systems persists in this field. Research in this area has been limited, because the needs of these vulnerable elderly people are complex and diverse. Moreover, these factors encompass interrelated medical, psychiatric, economic, social, and functional problems. In 2004, the National Institutes of Health Interdisciplinary Roadmap Initiative provided the means for preliminary exploration of elder self-neglect through the formation of the Consortium for Research in Elder Self-neglect of Texas (CREST). The goals of CREST include to conduct pilot studies, form interdisciplinary working groups, convene a national research conference, and appoint a national external advisory board. CREST orchestrated the work of 35 interdisciplinary investigators to achieve these goals. CREST researchers have begun to characterize the population of vulnerable elderly people who were reported to APS for neglecting themselves. The pilot studies provided a snapshot of 100 elderly people who had neglected themselves. A proposed next phase could involve a prospective longitudinal study of elderly people with severe self-neglect. This study of the clinical course, the death rate, the causes of death, the occurrence of acute and chronic medical or mental illness, and the costs to the healthcare and social systems would greatly inform the field of elder mistreatment.

  15. User involvement in adolescents' mental healthcare: protocol for a systematic review.

    Science.gov (United States)

    Viksveen, Petter; Bjønness, Stig Erlend; Berg, Siv Hilde; Cardenas, Nicole Elizabeth; Game, Julia Rose; Aase, Karina; Storm, Marianne

    2017-12-21

    User involvement has become a growing importance in healthcare. The United Nations state that adolescents have a right to be heard, and user involvement in healthcare is a legal right in many countries. Some research provides an insight into the field of user involvement in somatic and mental healthcare for adults, but little is known about user involvement in adolescents' mental healthcare, and no overview of the existing research evidence exists. The aim of this systematic review is to provide an overview of existing research reporting on experiences with and the effectiveness and safety issues associated with user involvement for adolescents' mental healthcare at the individual and organisational level. A systematic literature search and assessment of published research in the field of user involvement in adolescents' mental healthcare will be carried out. Established guidelines will be used for data extraction (Cochrane Collaboration guidelines, Strengthening the Reporting of Observational studies in Epidemiology and Critical Appraisal Skills Programme (CASP)), critical appraisal (Cochrane Collaboration guidelines and Pragmatic-Explanatory Continuum Indicator Summary) and reporting of results (Preferred Reporting Items for Systematic reviews and Meta-Analyses, Consolidated Standards of Reporting Trials and CASP). Confidence in the research evidence will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach. Adolescents are included as coresearchers for the planning and carrying out of this systematic review. This systematic review will provide an overview of the existing research literature and thereby fill a knowledge gap. It may provide various stakeholders, including decision-makers, professionals, individuals and their families, with an overview of existing knowledge in an underexplored field of research. Ethics approval is not required for this systematic review as we are not collecting primary data. The results

  16. Parental Involvement in Elementary Children's Religious Education: A Phenomenological Inquiry

    Science.gov (United States)

    Bunnell, Peter W.; Yocum, Russell; Koyzis, Anthony; Strohmyer, Karin

    2018-01-01

    Biblical texts mandate parental involvement in children's religious education. Researchers consider it important as well. Through analysis of interviews, site documents, and a focus group this phenomenological study seeks to provide a rich description of parents' experience with involvement in the religious education of their elementary children.…

  17. Research Training, Institutional Support, and Self-Efficacy: Their Impact on Research Activity of Social Workers

    Directory of Open Access Journals (Sweden)

    Mark Thomas Lynch

    2009-11-01

    Full Text Available While the expectations for social work practitioners to do research have increased, their involvement is still limited. We know little about what factors influence involvement in research. The present study proposes a theoretical model that hypothesizes research training and institutional support for research as the exogenous variables, research self-efficacy as an intervening variable, and research activity as the endogenous variable. The study tests the model using data collected from a random sample of social workers. To a large degree the data support the model. Research self-efficacy has a significant effect on research activity. It is also an important mediating variable for the effect of institutional support on research activity. Although institutional support for research has no direct effect, it has an indirect effect via self-efficacy on research activity. However, research training has no effect on research activity and self-efficacy in research. The implications of these findings are discussed.

  18. Parental Involvement and Children's Readiness for School in China

    Science.gov (United States)

    Lau, Eva Y. H.; Li, Hui; Rao, Nirmala

    2011-01-01

    Background: The remarkable academic advancement of Asian students in cross-national studies has been attributed to numerous factors, including the value placed on education by Chinese parents. However, there is a dearth of research on how exactly Chinese parents are involved in children's early learning. Purpose: This study has two major research…

  19. Fathers of Children in Public Preschool Programs: A Study of School Involvement and Satisfaction

    Science.gov (United States)

    Noggle, Amy Kappel

    2012-01-01

    In this quantitative study, I examined the involvement levels of fathers of children attending public preschool programs using the Family Involvement Questionnaire; I also examined fathers' satisfaction with school contact and involvement experiences using the Parent Satisfaction with Educational Experiences scale. Additionally, I…

  20. [Conceptual and methodological issues involved in the research field of diagnostic reasoning].

    Science.gov (United States)

    Di Persia, Francisco N

    2016-05-01

    The psychopathological field is crossed by dilemmas that put in question its methodological, conceptual and philosophical filiations. Since the early works of Ey and Jaspers until recent work of Berrios it has been in question the position psychopathology has in the field of medicine in general, and in the field of psychiatry in particular, especially if it should follow the principles of natural science or if it has an autonomous position between them. This debate has led to two opposing positions facing two different models of psychopathology: the biomedical model and the socio-constructionist model. In this work it is proposed to review the scope and difficulties involved in each model following two central axes: diagnostic reasoning and mental illness conceptual problem. Later, as a synthesis of the analysis proposed they are identified central concepts of each model that could allow the development of a hybrid model in psychopathology; in between them the comprehensive framework employed in symptoms recognition and the social component that characterizes it are highlighted. As a conclusion, these concepts are proposed as central aspects for conceptual and methodological clarification of the research field of diagnostic reasoning in psychopathology.

  1. Factors associated with sex work involvement among transgender women in Jamaica: a cross-sectional study.

    Science.gov (United States)

    Logie, Carmen H; Wang, Ying; Lacombe-Duncan, Ashley; Jones, Nicolette; Ahmed, Uzma; Levermore, Kandasi; Neil, Ava; Ellis, Tyrone; Bryan, Nicolette; Marshall, Annecka; Newman, Peter A

    2017-04-06

    Transgender women are disproportionately impacted by HIV. Transgender women involved in sex work may experience exacerbated violence, social exclusion, and HIV vulnerabilities, in comparison with non-sex work-involved transgender women. Scant research has investigated sex work among transgender women in the Caribbean, including Jamaica, where transgender women report pervasive violence. The study objective was to examine factors associated with sex work involvement among transgender women in Jamaica. In 2015, we implemented a cross-sectional survey using modified peer-driven recruitment with transgender women in Kingston and Ocho Rios, Jamaica, in collaboration with a local community-based AIDS service organization. We conducted multivariable logistic regression analyses to identify factors associated with paid sex and transactional sex. Exchanging oral, anal or vaginal sex for money only was categorized as paid sex. Exchanging sex for survival needs (food, accommodation, transportation), drugs or alcohol, or for money along with survival needs and/or drugs/alcohol, was categorized as transactional sex. Among 137 transgender women (mean age: 24.0 [SD: 4.5]), two-thirds reported living in the Kingston area. Overall, 25.2% reported being HIV-positive. Approximately half (n = 71; 51.82%) reported any sex work involvement, this included sex in exchange for: money (n = 64; 47.06%); survival needs (n = 27; 19.85%); and drugs/alcohol (n = 6; 4.41%). In multivariable analyses, paid sex and transactional sex were both associated with: intrapersonal (depression), interpersonal (lower social support, forced sex, childhood sexual abuse, intimate partner violence, multiple partners/polyamory), and structural (transgender stigma, unemployment) factors. Participants reporting transactional sex also reported increased odds of incarceration perceived to be due to transgender identity, forced sex, homelessness, and lower resilience, in comparison with participants reporting

  2. Implementing a Parental Involvement Program to Improve Parents' Engagement in Their Children's Learning: An Action Research Study

    Science.gov (United States)

    Youssef, Saoussen S.

    2017-01-01

    Since the early 1900s, the traditional thinking about education and school role in the USA has shifted to view schools as non-isolated entities from the larger society where schooling should be re-energized with help from the society, which includes student homes and communities. This mixed approach action research study evolves around improving…

  3. Correlates of male involvement in maternal and newborn health: a cross-sectional study of men in a peri-urban region of Myanmar.

    Science.gov (United States)

    Ampt, Frances; Mon, Myo Myo; Than, Kyu Kyu; Khin, May May; Agius, Paul A; Morgan, Christopher; Davis, Jessica; Luchters, Stanley

    2015-05-27

    Evidence suggests that increasing male involvement in maternal and newborn health (MNH) may improve MNH outcomes. However, male involvement is difficult to measure, and further research is necessary to understand the barriers and enablers for men to engage in MNH, and to define target groups for interventions. Using data from a peri-urban township in Myanmar, this study aimed to construct appropriate indicators of male involvement in MNH, and assess sociodemographic, knowledge and attitude correlates of involvement. A cross-sectional study of married men with one or more children aged up to one year was conducted in 2012. Structured questionnaires measured participants' involvement in MNH, and their sociodemographic characteristics, knowledge and attitudes. An ordinal measure of male involvement was constructed describing the subject's participation across five areas of MNH, giving a score of 1-4. Proportional-odds regression models were developed to determine correlates of male involvement. A total of 210 men participated in the survey, of which 203 provided complete data. Most men reported involvement level scores of either 2 or 3 (64 %), with 13 % reporting the highest level (score of 4). Involvement in MNH was positively associated with wives' level of education (AOR = 3.4; 95 % CI: 1.9-6.2; p MNH (AOR = 1.2; 95 % CI: 1.1-1.3; p MNH. The composite index proved a useful summary measure of involvement; however, it may have masked differential determinants of the summed indicators. There is a need for greater understanding of the influence of gender attitudes on male involvement in Myanmar and more robust indicators that capture these gender dynamics for use both in Myanmar and globally.

  4. Accelerator research studies

    International Nuclear Information System (INIS)

    1990-01-01

    This progress report for the Accelerator Research Studies program at the University of Maryland covers the second year (June 1, 1989 to May 31, 1990) of the current three-year contract period from June 1, 1988 to May 31, 1991, funded by the Department of Energy under Contract No. AC05-85ER40216. The research program is divided into three separate tasks, as follows: the study of Transport and Longitudinal Compression of Intense, High-Brightness Beams; the study of Collective Ion Acceleration by Intense Electron Beams and Pulse-Powered Plasma Focus; the study of Microwave Sources and Parameter Scaling for High-Frequency Linacs. This report consists of three sections in which the progress for each task is documented separately. An introduction and synopsis is presented at the beginning of the progress report for each task

  5. Harnessing the power of the grassroots to conduct public health research in sub-Saharan Africa: a case study from western Kenya in the adaptation of community-based participatory research (CBPR) approaches

    Science.gov (United States)

    2013-01-01

    Background Community-based participatory research (CBPR) is a collaborative approach to research that involves the equitable participation of those affected by an issue. As the field of global public health grows, the potential of CBPR to build capacity and to engage communities in identification of problems and development and implementation of solutions in sub-Saharan Africa has yet to be fully tapped. The Orphaned and Separated Children’s Assessments Related to their Health and Well-Being (OSCAR) project is a longitudinal cohort of orphaned and non-orphaned children in Kenya. This paper will describe how CBPR approaches and principles can be incorporated and adapted into the study design and methods of a longitudinal epidemiological study in sub-Saharan Africa using this project as an example. Methods The CBPR framework we used involves problem identification, feasibility and planning; implementation; and evaluation and dissemination. This case study will describe how we have engaged the community and adapted CBPR methods to OSCAR’s Health and Well-being Project’s corresponding to this framework in four phases: 1) community engagement, 2) sampling and recruitment, 3) retention, validation, and follow-up, and 4) analysis, interpretation and dissemination. Results To date the study has enrolled 3130 orphaned and separated children, including children living in institutional environments, those living in extended family or other households in the community, and street-involved children and youth. Community engagement and participation was integral in refining the study design and identifying research questions that were impacting the community. Through the participation of village Chiefs and elders we were able to successfully identify eligible households and randomize the selection of participants. The on-going contribution of the community in the research process has been vital to participant retention and data validation while ensuring cultural and

  6. Does employee involvement work? Yes, sometimes.

    Science.gov (United States)

    Cotton, J L

    1997-12-01

    Employee involvement per se is not always effective for improving performance and/or employee attitudes. Rather, there are several different forms of employee involvement, some of which are effective, while others are not. This article describes seven forms of employee involvement, giving examples, and summarizes research findings for each form, concluding with a summary of which are the best and which are worst. This article also describes what is necessary for effective employee involvement, focusing on management commitment and training for both management and employees.

  7. Dilemmas within Commercial Involvement in Open Source Software

    DEFF Research Database (Denmark)

    Ciesielska, Malgorzata; Westenholz, Ann

    2016-01-01

    to free-riding. There are six levels of commercial involvement in open source communities, and each of them is characterized by a different dilemma. Originality/value – The paper sheds light on the various level of involvement of business in open source movement and emphasize that the popularized “open......Purpose – The purpose of this paper is to contribute to the literature about the commercial involvement in open source software, levels of this involvement and consequences of attempting to mix various logics of action. Design/methodology/approach – This paper uses the case study approach based...... on mixed methods: literature reviews and news searches, electronic surveys, qualitative interviews and observations. It combines discussions from several research projects as well as previous publications to present the scope of commercial choices within open source software and their consequences...

  8. Exploring the experiences of substitute decision-makers with an exception to consent in a paediatric resuscitation randomised controlled trial: study protocol for a qualitative research study

    OpenAIRE

    Parker, Melissa J; de Laat, Sonya; Schwartz, Lisa

    2016-01-01

    Introduction Prospective informed consent is required for most research involving human participants; however, this is impracticable under some circumstances. The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS) outlines the requirements for research involving human participants in Canada. The need for an exception to consent (deferred consent) is recognised and endorsed in the TCPS for research in individual medical emergencies; however, little is known abou...

  9. Established and outsider relations among students involved in a health promotion intervention in a Danish high school

    DEFF Research Database (Denmark)

    Nielsen, Stine Frydendal; Ottesen, Laila; Thing, Lone Friis

    2016-01-01

    The paper considers a study in a Danish high school in which students were involved in enhancing physical activity in their own school. International research points out that adolescents are not as physically active as recommended. Moreover, studies show that maintaining health promotion interven......The paper considers a study in a Danish high school in which students were involved in enhancing physical activity in their own school. International research points out that adolescents are not as physically active as recommended. Moreover, studies show that maintaining health promotion...... and the importance of theoretical pointers to insure that the researcher does not lose herself in the research field. Elias unfolds this methodological approach in “The Established and the Outsiders.” By applying this conceptualization, this study shows that some of the involved students found their role...... and their identity as “sports-students” difficult, and it compromised their social life in the school, which relates to aspects that does not always correspond with the current health norms. The paper discusses the relations between the involved students and the other students in the school, and what consequences...

  10. Researcher positioning

    DEFF Research Database (Denmark)

    Mørck, Line Lerche; Khawaja, Iram

    2009-01-01

    abstract  This article focuses on the complex and multi-layered process of researcher positioning, specifically in relation to the politically sensitive study of marginalised and ‘othered' groups such as Muslims living in Denmark. We discuss the impact of different ethnic, religious and racial...... political and personal involvement by the researcher, which challenges traditional perspectives on research and researcher positioning. A key point in this regard is the importance of constant awareness of and reflection on the multiple ways in which one's positioning as a researcher influences the research...

  11. The perspective of European researchers of national occupational safety and health institutes for contributing to a European research agenda: a modified Delphi study.

    Science.gov (United States)

    Gagliardi, Diana; Rondinone, Bruna M; Mirabile, Marco; Buresti, Giuliana; Ellwood, Peter; Hery, Michel; Paszkiewicz, Peter; Valenti, Antonio; Iavicoli, Sergio

    2017-06-23

    This study, developed within the frame of the Partnership for European Research on Occupational Safety and Health joint research activities and based on the frame designed by the 2013 European Agency for Safety and Health at Work (EU-OSHA) study, is the first example of using the points of view of European occupational safety and health (OSH) researchers.The objective is to identify priorities for OSH research that may contribute to the achievement of present and future sustainable growth objectives set by the European strategies. The study was carried out using a modified Delphi method with a two-round survey. Each round involved a panel of about 110 researchers representing the network member institutes was selected according to specific criteria, including the ownership of research expertise in at least one of the four macroareas identified by the reference report developed by EU-OSHA in 2013. The study identified some innovative research topics (for example, 'Emerging technological devices' and 'OSH consequences of markets integration') and research priorities (ie, crowdsourcing, e-work, zero-hours contract s ) that are not reflected in previous studies of this nature.The absence of any reference to violence and harassment at work among the researchers' proposals is a major difference from previous similar studies, while topics related to gender issues and electromagnetic fields show a lower importance. The innovative design of a research priorities identification process, which takes advantage of a large, representative and qualified panel of European researchers allowed the definition of a number of research priorities able to support the inclusion of innovative OSH research issues in the scope of the next European research agenda. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  12. The Benefits of Partnership Schemes to Schools and Research Students: A Case Study of the Researchers in Residence Scheme

    Science.gov (United States)

    Barley, Helen; Karim, Muhammed; Gilchrist, Myra; Gillies, Andrew

    2013-01-01

    To meet the needs of a modern Scottish society, a "Curriculum for Excellence" enables teachers to deliver a more coherent and skills-based curriculum, involving partnerships with external agencies. This article analyses the work of one host school/researcher team through the Researchers in Residence scheme in an Edinburgh secondary…

  13. CT and pathologic studies in detecting hepatic involvement of malignant lymphoma

    International Nuclear Information System (INIS)

    Okazaki, Atsushi; Niibe, Hideo; Mitsuhashi, Norio

    1985-01-01

    In order to determine the value of CT in detecting lymphomatous involvement of the liver, 57 autopsied cases (48 cases of non-Hodgkin lymphoma and 9 of Hodgkin's disease) were analyzed in detail. Additionally, 90 recent cases of abdominal CT with liver study in the initial staging were reviewed and 6 cases in which the liver had been examined within 2 weeks before autopsy were compared for macroscopic and pathologic findings. The following results were obtained. 1) Autopsy findings in 57 cases of malignant lymphoma. (1) Hepatic involvement was demonstrated in 56% of the patients with non-Hodgkin lymphoma and in 67% of those with Hodgkin's disease. (2) Of these patients with hepatic involvement, intrahepatic nodular lesions over 1.0cm in diameter were macroscopically identified in 22% of the cases of non-Hodgkin lymphoma and 33% of those with Hodgkin's disease. (3) Lymphomatous involvements were seen in many organs in the cases of hepatic involvement. 2) CT examinations of 90 cases for the initial staging showed no significant abnormality in the liver or spleen. 3) Of the 6 cases in which the liver was examined by CT within about 2 weeks before autopsy, lymphomatous involvemet was pathologically diagnosed in 5. Of these, only one having multiple nodules larger than the tip of a thumb was correctly diagnosed by CT. 4) Hepatic involvement of lymphoma was thought to be the end stage, and minimal or early disease was detected in the region of Glisson's capsule. The above findings indicate that early hepatic involvement is not likely to be detected by CT at the present time. (author)

  14. Stakeholder involvement in systematic reviews: a protocol for a systematic review of methods, outcomes and effects.

    Science.gov (United States)

    Pollock, Alex; Campbell, Pauline; Struthers, Caroline; Synnot, Anneliese; Nunn, Jack; Hill, Sophie; Goodare, Heather; Watts, Chris; Morley, Richard

    2017-01-01

    about (A) how to do this and (B) the effects, or impact, of such involvement. We aim to create a map of the evidence relating to stakeholder involvement in systematic reviews, and use this evidence to address the two points above. Methods We will complete a mixed-method synthesis of the evidence, first completing a scoping review to create a broad map of evidence relating to stakeholder involvement in systematic reviews, and secondly completing two contingent syntheses. We will use a stepwise approach to searching; the initial step will include comprehensive searches of electronic databases, including CENTRAL, AMED, Embase, Medline, Cinahl and other databases, supplemented with pre-defined hand-searching and contacting authors. Two reviewers will undertake each review task (i.e., screening, data extraction) using standard systematic review processes. For the scoping review, we will include any paper, regardless of publication status or study design, which investigates, reports or discusses involvement in a systematic review. Included papers will be summarised within structured tables. Criteria for judging the focus and comprehensiveness of the description of methods of involvement will be applied, informing which papers are included within the two contingent syntheses. Synthesis A will detail the methods that have been used to involve stakeholders in systematic reviews. Papers from the scoping review that are judged to provide an adequate description of methods or approaches will be included. Details of the methods of involvement will be extracted from included papers using pre-defined headings, presented in tables and described narratively. Synthesis B will include studies that explore the effect of stakeholder involvement on the quality, relevance or impact of a systematic review, as identified from the scoping review. Study quality will be appraised, data extracted and synthesised within tables. Discussion This review should help researchers select, improve and

  15. Decisions and involvement of cancer patient survivors: a moral imperative

    Directory of Open Access Journals (Sweden)

    Pravettoni G

    2016-12-01

    Full Text Available Gabriella Pravettoni,1,2 Ilaria Cutica,1,2 Simona Righetti,1 Ketti Mazzocco1,2 1Department of Oncology and Hematology, University of Milan, 2Applied Research Division for Cognitive and Psychological Science, European Institute of Oncology, Milan, Italy Purpose: The aim of this study was to review the experiences of direct involvement in patient survivorship for treatment and research. Methods: This is a narrative-focused review of the following two recent experiences of patient involvement: the Chordoma Foundation and the Triple Negative Breast Cancer Foundation. Results: These two examples represent concrete experiences that patients have built to favor a real involvement in the care and treatment of tumors. These experiences are profoundly modifying how cancer research is conducted and draw attention to the psychosocial dimensions of health care. Conclusion: These examples represent the new scenario in which modern medicine faces completely new challenges, copes with new needs, and cooperates with new health care professionals. Implications: Involving patients in a new perspective raises practical and ethical challenges for organizations to work together, for health providers to be professionally skilled and for the government to promote safeguarding policies. Keywords: patient empowerment, patients’ association, empowerment, skills, codesign ­techniques, cancer

  16. Universities as Research Partners

    OpenAIRE

    Hall, Bronwyn; Link, Albert; Scott, John

    2010-01-01

    Universities are a key institution in the U.S. innovation system, and an important aspect of their involvement is the role they play in public-private partnerships. This note offers insights into the performance of industry-university research partnerships, using a survey of precommercial research projects funded by the Advanced Technology Program. Although results must be interpreted cautiously because of the small size of the sample, the study finds that projects with university involvement...

  17. Engaging the oldest old in research: lessons from the Newcastle 85+ study

    Directory of Open Access Journals (Sweden)

    Davies Karen

    2010-09-01

    Full Text Available Abstract Background Those aged 85 and over, the oldest old, are now the fastest growing sector of the population. Information on their health is essential to inform future planning; however, there is a paucity of up-to-date information on the oldest old, who are often excluded from research. The aim of the Newcastle 85+ Study is to investigate the health of a cohort of 85-year-olds from a biological, medical and psychosocial perspective. This paper describes the methods employed for the successful recruitment, retention and evaluation of this cohort. Methods Participants were all individuals born in 1921 and registered with a participating general practice in Newcastle and North Tyneside, UK. Involvement comprised detailed health assessments, by a nurse, in their usual place of residence and/or review of their general practice medical records. Results Of the 1453 individuals eligible to participate, 72% (n = 1042 were recruited; 59% (n = 851 consented to both health assessment and review of general practice records. Key factors for successful involvement included protected time to engage with family and other key gatekeepers, minimising participant burden, through for example home based assessment, and flexibility of approach. Cognitive impairment is a significant issue; due consideration should be given to the ethical and legal issues of capacity and consent. Interim withdrawal rates at phase 2 (18 month post baseline, show 88 out of 854 participants (10% had withdrawn with approval for continued use of data and materials and a further 2 participants (0.2% had withdrawn and requested that all data be destroyed. Attrition due to death of participants within this same time frame was 135 (16%. Conclusion Our recruitment rates were good and compared favourably with other similar UK and international longitudinal studies of the oldest old. The challenges of and successful strategies for involving, recruiting and retaining the oldest old in research

  18. Comprehension of Action Negation Involves Inhibitory Simulation

    Directory of Open Access Journals (Sweden)

    Francesco eForoni

    2013-05-01

    Full Text Available Previous research suggests that action language is comprehended by activating the motor system. We report a study, investigating a critical question in this research field: Do negative sentences activate the motor system? Participants were exposed to sentences in the affirmation and negation forms while the zygomatic muscle activity on the left side of the face was continuously measured (Electromyography technique: EMG. Sentences were descriptions of emotional expressions that mapped either directly upon the zygomatic muscle (e.g., ‘I am smiling’ or did not (e.g., ‘I am frowning’. Reading sentences involving the negation of the activity of a specific muscle (zygomatic major - I am not smiling is shown to lead to the inhibition of this muscle. Reading sentences involving the affirmative form instead (I am smiling leads to the activation of zygomatic mucle. In contrast, sentences describing an activity that is irrelevant to the zygomatic muscle (e.g., ‘I am frowning’ or ‘I am not frowning’ produce no muscle activity. These results extend the range of simulation models to negation and by implication to an abstract domain. We discuss how this research contributes to the grounding of abstract and concrete concepts.

  19. Improving brain computer interface research through user involvement - The transformative potential of integrating civil society organisations in research projects

    Science.gov (United States)

    Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian

    2017-01-01

    Research on Brain Computer Interfaces (BCI) often aims to provide solutions for vulnerable populations, such as individuals with diseases, conditions or disabilities that keep them from using traditional interfaces. Such research thereby contributes to the public good. This contribution to the public good corresponds to a broader drive of research and funding policy that focuses on promoting beneficial societal impact. One way of achieving this is to engage with the public. In practical terms this can be done by integrating civil society organisations (CSOs) in research. The open question at the heart of this paper is whether and how such CSO integration can transform the research and contribute to the public good. To answer this question the paper describes five detailed qualitative case studies of research projects including CSOs. The paper finds that transformative impact of CSO integration is possible but by no means assured. It provides recommendations on how transformative impact can be promoted. PMID:28207882

  20. Improving brain computer interface research through user involvement - The transformative potential of integrating civil society organisations in research projects.

    Science.gov (United States)

    Stahl, Bernd Carsten; Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian

    2017-01-01

    Research on Brain Computer Interfaces (BCI) often aims to provide solutions for vulnerable populations, such as individuals with diseases, conditions or disabilities that keep them from using traditional interfaces. Such research thereby contributes to the public good. This contribution to the public good corresponds to a broader drive of research and funding policy that focuses on promoting beneficial societal impact. One way of achieving this is to engage with the public. In practical terms this can be done by integrating civil society organisations (CSOs) in research. The open question at the heart of this paper is whether and how such CSO integration can transform the research and contribute to the public good. To answer this question the paper describes five detailed qualitative case studies of research projects including CSOs. The paper finds that transformative impact of CSO integration is possible but by no means assured. It provides recommendations on how transformative impact can be promoted.

  1. Consumers’ versatile buying behavior irrespective to high and low involvement products

    OpenAIRE

    Hasan, Syed Akif; Subhani, Muhammad Imtiaz; Osman, Ms. Amber

    2012-01-01

    The consumers of today are impulse and cautious buyers at the same time. This study basically comprehends the concept of non-linearity towards the consumer purchase behavior for either high or low involvement of products. The research was interesting to note the consumption patterns of different product classes. The peculiarity of this study found the same non-linearity wavelengths between the high and low involvement products’ that was shaped by the consumers buying intention and actions. AD...

  2. Design science research as research approach in doctoral studies

    CSIR Research Space (South Africa)

    Kotzé, P

    2015-08-01

    Full Text Available Since the use of design science research (DSR) gained momentum as a research approach in information systems (IS), the adoption of a DSR approach in postgraduate studies became more acceptable. This paper reflects on a study to investigate how a...

  3. Involving citizens in priority setting for public health research: Implementation in infection research.

    Science.gov (United States)

    Rawson, Timothy M; Castro-Sánchez, Enrique; Charani, Esmita; Husson, Fran; Moore, Luke S P; Holmes, Alison H; Ahmad, Raheelah

    2018-02-01

    Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research. A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three-hour focus group exploring views on engagement in strategic decisions and in-depth evaluation of the tool. 188/491(38%) prioritized funding research into drug-resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of "non-experts" as decision makers were expressed. Voting scenarios can be used to collect, en-masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  4. The role of Customer Involvement in Library E-services

    DEFF Research Database (Denmark)

    Scupola, Ada; Nikolajsen, H. W.

    2009-01-01

    We investigate customer involvement in the development of e-service within research Libraries. By revisiting earlier research on innovation processes as well as newer research on new product and new service development we derive a conceptual model on different actors that are important in the pro......We investigate customer involvement in the development of e-service within research Libraries. By revisiting earlier research on innovation processes as well as newer research on new product and new service development we derive a conceptual model on different actors that are important...

  5. Parent Perceptions of Parent Involvement with Elementary-Aged Students with Learning Disabilities

    Science.gov (United States)

    Rice, Holly

    2017-01-01

    The purpose of this research was to explore parent perceptions concerning their involvement in their children's special education. The goal of this study was to better understand why some parents become involved while others do not. Survey methodology was utilized to determine parent perceptions of (a) levels of parent and children's participation…

  6. Case Study Research Methodology

    Directory of Open Access Journals (Sweden)

    Mark Widdowson

    2011-01-01

    Full Text Available Commenting on the lack of case studies published in modern psychotherapy publications, the author reviews the strengths of case study methodology and responds to common criticisms, before providing a summary of types of case studies including clinical, experimental and naturalistic. Suggestions are included for developing systematic case studies and brief descriptions are given of a range of research resources relating to outcome and process measures. Examples of a pragmatic case study design and a hermeneutic single-case efficacy design are given and the paper concludes with some ethical considerations and an exhortation to the TA community to engage more widely in case study research.

  7. Building Sustainable Research Engagements: Lessons Learned from Research with Schools

    Science.gov (United States)

    Vukotich, Charles J., Jr.; Cousins, Jennifer; Stebbins, Samuel

    2014-01-01

    Engaged scholarship, translational science, integrated research, and interventionist research, all involve bringing research into a practical context. These usually require working with communities and institutions, and often involve community based participatory research. The article offers practical guidance for engaged research. The authors…

  8. Factors influencing first-time fathers' involvement in their wives' pregnancy and childbirth: A correlational study.

    Science.gov (United States)

    Xue, Weilin Lynn; He, Hong-Gu; Chua, Ying Jie; Wang, Wenru; Shorey, Shefaly

    2018-03-20

    To examine factors influencing first-time fathers' involvement in their wives' pregnancy and childbirth in Singapore. A cross-sectional descriptive correlational study was conducted in a public tertiary hospital in Singapore. A total of 182 first-time fathers whose wives were hospitalized at four obstetric wards were recruited from November 2015 to January 2016. Data were collected by three newly developed and validated instruments, namely Father's Involvement in Pregnancy and Childbirth, Father's Informational and Sources of Support, and Father's Attitude Towards Involvement in Pregnancy and Childbirth, as well as the 16-item Couple Satisfaction Index and Family of Origin Questionnaire. The participants were generally involved in their wives' pregnancy and childbirth, with 35.2% being highly involved. There was no significant difference in fathers' levels of involvement between or among any sociodemographic subgroups. Significant Spearman's correlations were found between fathers' levels of involvement and levels of informational support as well as fathers' attitudes towards involvement. However, the logistic regression showed the level of informational support was the only significant factor that influenced first-time fathers' high levels of involvement in their wives' pregnancy and childbirth. The study revealed the importance of providing sufficient informational support to first-time fathers so that they can be highly involved in their wife's pregnancy and childbirth. Future studies can develop technology-based intervention programmes to improve fathers' involvement in their wife's pregnancy and childbirth. Healthcare professionals should examine and improve the existing informational support for first-time fathers and ensure its relevance and convenient access. Copyright © 2018 Elsevier Ltd. All rights reserved.

  9. Trucks involved in fatal accidents factbook 2008.

    Science.gov (United States)

    2011-03-01

    This document presents aggregate statistics on trucks involved in traffic accidents in 2008. The : statistics are derived from the Trucks Involved in Fatal Accidents (TIFA) file, compiled by the : University of Michigan Transportation Research Instit...

  10. Buses involved in fatal accidents factbook 2007

    Science.gov (United States)

    2010-03-01

    This document presents aggregate statistics on buses involved in traffic accidents in 2007. The : statistics are derived from the Buses Involved in Fatal Accidents (BIFA) file, compiled by the : University of Michigan Transportation Research Institut...

  11. Trucks involved in fatal accidents factbook 2007.

    Science.gov (United States)

    2010-01-01

    This document presents aggregate statistics on trucks involved in traffic accidents in 2007. The : statistics are derived from the Trucks Involved in Fatal Accidents (TIFA) file, compiled by the : University of Michigan Transportation Research Instit...

  12. Customer Segmentation by Factors Influencing Brand Loyalty and Customer Involvement

    Directory of Open Access Journals (Sweden)

    Tereza Vebrová

    2016-01-01

    Full Text Available Brand loyalty and customer involvement are two important concepts that help explain and understand a significant part of consumer shopping behavior. The aim of the present work is to identify factors influencing brand loyalty and customer involvement. A further aim is to consider subsequent segmentation of customers with respect to different degrees of brand loyalty and customer involvement. The research was focused on the field of Czech telecommunication services – mobile operators. Primary data were acquired through the method of questionnaire survey. In total, the questionnaire was completed by 340 respondents, of which 319 respondents owned their mobile phones for private purposes only. For more accurate interpretation of the identified factors the Exploratory Factor Analysis method was used. Four factors of brand loyalty were extracted, which account for 75 % of the variability of the original parameters: (1 Cognitive affective loyalty, (2 Trustworthiness, (3 Attitudinal loyalty and (4 Commitment and three factors of customer involvement were found to account for 71 % variability of the original parameters: (1 Social involvement, (2 Centrality, (3 Importance. High loyalty customers mostly have only one SIM card and 73 % of them use a tariff. In a further group of highly involved customers own from 80 % only one SIM card. This study forms part of a research programme investigating the influence of customer involvement on brand loyalty.

  13. Case Study Observational Research: A Framework for Conducting Case Study Research Where Observation Data Are the Focus.

    Science.gov (United States)

    Morgan, Sonya J; Pullon, Susan R H; Macdonald, Lindsay M; McKinlay, Eileen M; Gray, Ben V

    2017-06-01

    Case study research is a comprehensive method that incorporates multiple sources of data to provide detailed accounts of complex research phenomena in real-life contexts. However, current models of case study research do not particularly distinguish the unique contribution observation data can make. Observation methods have the potential to reach beyond other methods that rely largely or solely on self-report. This article describes the distinctive characteristics of case study observational research, a modified form of Yin's 2014 model of case study research the authors used in a study exploring interprofessional collaboration in primary care. In this approach, observation data are positioned as the central component of the research design. Case study observational research offers a promising approach for researchers in a wide range of health care settings seeking more complete understandings of complex topics, where contextual influences are of primary concern. Future research is needed to refine and evaluate the approach.

  14. Integrating social science knowledge into natural resource management public involvement practice

    DEFF Research Database (Denmark)

    Stummann, Cathy Brown

    This PhD study explores the long-recognized challenge of integrating social science knowledge into NRM public involvement practice theoretically and empirically. Theoretically, the study draws on research from adult learning, continuing rofessional education and professional knowledge development...... to better understand how social science knowledge can benefit NRM public involvement practice. Empirically, the study explores the potential of NRM continuing professional education as a means for introducing social science knowledge to public NRM professionals. The study finds social science knowledge can...... be of value to NRM public involvement prospectively and retrospectively; and that continuing professional education can be an effective means to introducing social science knowledge to public NRM professionals. In the design of NRM continuing professional education focused on social science knowledge...

  15. Stakeholders in nursing education: their role and involvement.

    Science.gov (United States)

    Virgolesi, M; Marchetti, A; Piredda, M; Pulimeno, A M L; Rocco, G; Stievano, A; De Marinis, M G

    2014-01-01

    In literature, there is evidence that all stakeholders need to be involved in the curricula building process to make sure that health professionals are "educated" to meet the stakeholders' "demands". In Italy, the involvement of stakeholders in the definition of university curricula is ratified by various regulations. To describe the major experiences of stakeholder involvement in nursing education, identify the main stakeholders for nursing education, and the processes in which they are involved. The search strategy included an electronic exploration of the relevant databases. The search terms were: Stakeholders, Curriculum, Nursing Education combined with Boolean operators. The references of the retrieved articles were hand searched for additional related studies. Most of the studies identified were from the United Kingdom, Australia, and the USA. In Italy, no relevant studies were found. The most frequently identified stakeholders were: students, clinicians, educators, nurse managers. They were mainly involved during profound changes in the curricula and the implementation of new educational approaches. Stakeholders are mostly involved in countries with a private funding system for universities. Such funding systems have probably developed in the academia a greater propensity to involve stakeholders, to provide recognition of success when starting new programs, and are perceived more as marketing research. This seems contrary to the spirit of the Italian and European regulatory interventions, which instead, provide a structured commitment to consolidating and expanding the collaboration among universities, users, and the world of labor. This latter collaboration should facilitate internship activities, lifelong learning, and employability of the newly-graduated professionals.

  16. Farming Systems Involving Fruit Crops Production And Research In ...

    African Journals Online (AJOL)

    Research interventions to expand the scope of the farmers have shown that greater efficiency of land utilization is exhibited. New areas of research for the evaluation, as well as suggests consideration for intercropping with fruit trees are suggested. The current challenges to fruit production were also identified, while the ...

  17. The involvement of extended families in the wellness of orphans in a primary school in Masvingo city in Zimbabwe

    OpenAIRE

    2014-01-01

    D.Phil. (Career and Life Orientation) The study focuses on how extended families are involved on the wellness of orphans at a primary school in Masvingo City in Zimbabwe. Through an ethnographic research design, the study aimed to establish the involvement of extended families and challenges they face in rendering support and care to orphans. This study draws an intensive ethnographic research interrogative approach through observations, interviews, researcher made test and document analys...

  18. DO CUSTOMERS’ INVOLVEMENT, SATISFACTION AND LOYALTY LEVELS DIFFER ACCORDING TO GENDER?

    Directory of Open Access Journals (Sweden)

    Volkan Özbek

    2016-12-01

    Full Text Available The main aim of this study is to reveal whether consumers’ product involvement, satisfaction and loyalty levels differentiate in terms of smart phones and perfume. In order to achieve this goal, a research was implemented by using survey method on 665 Balıkesir University Burhaniye School of Applied Science students who are determined with convenience sampling method. The reason of using this sample is the anticipation of that university students’ consciousness and involvement levels about smart phones and perfumes might be higher than other populations. The research results demonstrate that there are differences according to gender in symbolic value, risk probability, and hedonic value dimensions of involvement terms of smart phones. In terms of perfume products involvement, the results also indicate that there are differences according to gender in interest and hedonic value dimensions of involvement. In addition, it is identified that satisfaction and loyalty towards perfume brands is higher for women than men. However, it is found that satisfaction and loyalty levels towards smart phones do not show any difference according to gender.

  19. Making patient and public involvement in cancer and palliative research a reality: academic support is vital for success.

    Science.gov (United States)

    Collins, Karen; Boote, Jonathan; Ardron, David; Gath, Jacqui; Green, Tracy; Ahmedzai, Sam H

    2015-06-01

    Patient and public involvement (PPI) has become an established theme within the UK health research policy and is recognised as an essential force in the drive to improve the quality of services and research. These developments have been particularly rapid in the cancer field. This paper outlines a model of PPI in research (known as the North Trent Cancer Research Network Consumer Research Panel, NTCRN CRP; comprising 38 cancer and palliative care patients/carers) and the key benefits and challenges to effective PPI in cancer research. The PPI model has become a sustainable, inclusive and effective way of implementing PPI within the cancer context. Challenges include (1) a lack of time and funding available to support the PPI model; (2) tensions between different stakeholder groups when developing and conducting health research; (3) panel members finding it difficult to effectively integrate into research meetings when their role and contribution is not made clear at the outset or when unfamiliar language and jargon are used and not explained; (4) some professionals remain unclear about the role and practical implications of PPI in research. However, notwithstanding its financial and organisational challenges, the way that the NTCRN CRP is supported has provided a solid base for it to flourish. PPI provides considerable opportunities for patients and the public to work collaboratively with professionals to influence the cancer research agenda, with the contribution of PPI to the research process being integral to the entire process from the outset, rather than appended to it. 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.

  20. Stakeholder involvement in Swedish nuclear waste management

    International Nuclear Information System (INIS)

    Elam, Mark; Sundqvist, Goeran

    2006-09-01

    This report concerning Swedish nuclear waste management has been produced as part of a cross national research project: CARL - A Social Science Research Project into the Effects of Stakeholder involvement on Decision-Making in Radioactive Waste Management. Besides Sweden, the participating countries are Belgium, Canada, Finland, Slovenia and United Kingdom. A social science research team, working for three years, is in the first phase conducting research in their own countries in order to produce 6 country reports. During the next years the focus will shift to comparisons of stakeholder involvement practices in the participating countries. The report addresses current practices of Swedish nuclear waste management and their historical development. The main focus is on past, current and emerging patterns of stakeholder involvement in the siting of a deep repository for the final disposal of Sweden's spent nuclear fuel. The general questions attended to in the report are: Who are the main stakeholders, and how have they emerged and gained recognition as such? What are the issues currently subject to stakeholder involvement and how have these been decided upon? How is stakeholder involvement organized locally and nationally and how has this changed over time? How has stakeholder involvement gained acceptance as an activity of value in the siting of major waste facilities? The report have attempted to show the development of stakeholder involvement in the siting of a final repository for Sweden's spent nuclear fuel as resembling something other than a straightforward linear process of improvement and refinement. Stakeholder involvement has developed, over the past 15 years or so, into something more like a patchwork of different shapes and forms. Some of the forces that may well contribute to the further elaboration of the patchwork of stakeholder involvement have been pointed out, contingently modifying once more its overall colour and orientation. Questions have been

  1. Stakeholder involvement in Swedish nuclear waste management

    Energy Technology Data Exchange (ETDEWEB)

    Elam, Mark; Sundqvist, Goeran [Goeteborg Univ. (Sweden). Section for Science and Technology Studies

    2006-09-15

    This report concerning Swedish nuclear waste management has been produced as part of a cross national research project: CARL - A Social Science Research Project into the Effects of Stakeholder involvement on Decision-Making in Radioactive Waste Management. Besides Sweden, the participating countries are Belgium, Canada, Finland, Slovenia and United Kingdom. A social science research team, working for three years, is in the first phase conducting research in their own countries in order to produce 6 country reports. During the next years the focus will shift to comparisons of stakeholder involvement practices in the participating countries. The report addresses current practices of Swedish nuclear waste management and their historical development. The main focus is on past, current and emerging patterns of stakeholder involvement in the siting of a deep repository for the final disposal of Sweden's spent nuclear fuel. The general questions attended to in the report are: Who are the main stakeholders, and how have they emerged and gained recognition as such? What are the issues currently subject to stakeholder involvement and how have these been decided upon? How is stakeholder involvement organized locally and nationally and how has this changed over time? How has stakeholder involvement gained acceptance as an activity of value in the siting of major waste facilities? The report have attempted to show the development of stakeholder involvement in the siting of a final repository for Sweden's spent nuclear fuel as resembling something other than a straightforward linear process of improvement and refinement. Stakeholder involvement has developed, over the past 15 years or so, into something more like a patchwork of different shapes and forms. Some of the forces that may well contribute to the further elaboration of the patchwork of stakeholder involvement have been pointed out, contingently modifying once more its overall colour and orientation. Questions

  2. Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process.

    Science.gov (United States)

    Kearney, Anna; Williamson, Paula; Young, Bridget; Bagley, Heather; Gamble, Carrol; Denegri, Simon; Muir, Delia; Simon, Natalie A; Thomas, Stephen; Elliot, Jim T; Bulbeck, Helen; Crocker, Joanna C; Planner, Claire; Vale, Claire; Clarke, Mike; Sprosen, Tim; Woolfall, Kerry

    2017-12-01

    Despite increasing international interest, there is a lack of evidence about the most efficient, effective and acceptable ways to implement patient and public involvement (PPI) in clinical trials. To identify the priorities of UK PPI stakeholders for methodological research to help resolve uncertainties about PPI in clinical trials. A modified Delphi process including a two round online survey and a stakeholder consensus meeting. In total, 237 people registered of whom 219 (92%) completed the first round. One hundred and eighty-seven of 219 (85%) completed the second; 25 stakeholders attended the consensus meeting. Round 1 of the survey comprised 36 topics; 42 topics were considered in round 2 and at the consensus meeting. Approximately 96% of meeting participants rated the top three topics as equally important. These were as follows: developing strong and productive working relationships between researchers and PPI contributors; exploring PPI practices in selecting trial outcomes of importance to patients; and a systematic review of PPI activity to improve the accessibility and usefulness of trial information (eg participant information sheets) for participants. The prioritized methodological research topics indicate important areas of uncertainty about PPI in trials. Addressing these uncertainties will be critical to enhancing PPI. Our findings should be used in the planning and funding of PPI in clinical trials to help focus research efforts and minimize waste. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  3. Anthropogenic versus natural processes and pollution in Padana Valley in last years involving new communication/policy strategies and ethical issues in research evaluation

    Science.gov (United States)

    Quattrocchi, Fedora; Vaccaro, Carmela; Boschi, Enzo

    2014-05-01

    Smart grids-Smat cities "fashion" requires management plans of highly urbanized areas located over the Padanian floodplain, which are prone to diffuse pollution of both lands and urban sectors, mostly after the disasters caused by tremendous alluvial rains in January 2014, when shallow aquifers and agricultural matters could have increase pollution over wide territory. Moreover the urban expansion has affected areas previously used for industrial activity and in some cases such for landfills. When the loss of memory of previous activity prevails after urbanization, with health issues, ethical questions are inevitable, accompanied by social conflicts and economic impacts. The alluvial plains of active tectonic areas - as the Padania Valley - in additions to widespread "anthropogenic pollution" is suffering from widespread "natural pollution" of deep fluid sources - mainly methane - corresponding to areas prone to uprising gaseous brines, along faults. Some of them were partially activated during the 2012 Emilia seismic sequence. This noteworthy seismic sequence engaged discussion about the possible role of gas storages and hydrocarbons production or the simple/exploring drilling activity to trigger typical tectonic seismicity. The paper deepen this troubled communication strategy, their gaps and peculiar geopolicy case histories, to avoid the same strategy, in the future. On the other hand, gas burst or brine-gas-contamination in shallow aquifers, soils and indoor, should be studied by simple and cheap methods, by deepening stratigraphic gaps for the tectonics effects on sedimentation: natural processes should be recalled prior to recall anthropogenic causes, if any. Policy should be more responsible in state clearly the role of research in study infrastructures/processes, also when engaged by private companies, for sites selected by ministries mostly to star research: relevant gaps involves serious confusion in the public as regards responsibility and an exact

  4. Recruitment of ethnic minorities for public health research: An interpretive synthesis of experiences from six interlinked Danish studies.

    Science.gov (United States)

    Nielsen, Annemette Ljungdalh; Jervelund, Signe Smith; Villadsen, Sarah Fredsted; Vitus, Kathrine; Ditlevsen, Kia; TØrslev, Mette Kirstine; Kristiansen, Maria

    2017-03-01

    This paper examines the importance of recruitment site in relation to the recruitment of ethnic minorities into health research. It presents a synthesis of experiences drawn from six interlinked Danish studies which applied different methods and used healthcare facilities and educational settings as sites for recruitment. Inspired by interpretive reviewing, data on recruitment methods from the different studies were synthesized with a focus on the various levels of recruitment success achieved. This involved an iterative process of comparison, analysis and discussion of experiences among the researchers involved. Success in recruitment seemed to depend partly on recruitment site. Using healthcare facilities as the recruitment site and healthcare professionals as gatekeepers was less efficient than using schools and employees from educational institutions. Successful study designs also depended on the possibility of singling out specific locations with a high proportion of the relevant ethnic minority target population. The findings, though based on a small number of cases, indicate that health professionals and healthcare institutions, despite their interest in high-quality health research into all population groups, fail to facilitate research access to some of the most disadvantaged groups, who need to be included in order to understand the mechanisms behind health disparities. This happens despite the genuine wish of many healthcare professionals to help facilitate such research. In this way, the findings indirectly emphasize the specific challenge of accessing more vulnerable and sick groups in research studies.

  5. Empirical Scientific Research and Legal Studies Research--A Missing Link

    Science.gov (United States)

    Landry, Robert J., III

    2016-01-01

    This article begins with an overview of what is meant by empirical scientific research in the context of legal studies. With that backdrop, the argument is presented that without engaging in normative, theoretical, and doctrinal research in tandem with empirical scientific research, the role of legal studies scholarship in making meaningful…

  6. Public involvement and risk communiction for the Rocky Flats health studies

    International Nuclear Information System (INIS)

    Zoda, S.M.; Lockhart, A.J.

    1993-01-01

    In 1990, the State of Colorado and the U.S. Department of Energy entered into an Agreement in Principle that provides funding for state studies and monitoring of the Rocky Flats Nuclear Weapons Plant. The Colorado Department of Health initiated a two-phase study to identify releases of radioactive and other contaminants from the year 1952, when Rocky Flats opened, through 1989, and to estimate the potential offsite exposures and health effects. Because one of the main goals for the study is to answer citizen questions about past operations and impacts from the Rocky Flats Plant, the Department of Health designed an open study process featuring a multi-faceted program for public involvement and two-way communication. To provide independent scientific oversight and increase public accountability, Governor Roy Romer appointed a 12-member Health Advisory Panel that includes local and national technical experts and community members. This paper describes the study process and the public involvement and risk communication program designed to address citizen concerns, foster understanding and build credibility

  7. Parent Involvement and the Impact on Student Achievement in Grades 2-5

    Science.gov (United States)

    Thurber, Yvonne Marie

    2013-01-01

    This quantitative research study examined the relationship between student achievement in reading and mathematics on the STAR (Standardized Test for the Assessment of Reading and Mathematics) and parent involvement in specific character development activities. The research design was quantitative in nature and conducted in two similar elementary…

  8. Clinical reasoning and its application to nursing: concepts and research studies.

    Science.gov (United States)

    Banning, Maggi

    2008-05-01

    Clinical reasoning may be defined as "the process of applying knowledge and expertise to a clinical situation to develop a solution" [Carr, S., 2004. A framework for understanding clinical reasoning in community nursing. J. Clin. Nursing 13 (7), 850-857]. Several forms of reasoning exist each has its own merits and uses. Reasoning involves the processes of cognition or thinking and metacognition. In nursing, clinical reasoning skills are an expected component of expert and competent practise. Nurse research studies have identified concepts, processes and thinking strategies that might underpin the clinical reasoning used by pre-registration nurses and experienced nurses. Much of the available research on reasoning is based on the use of the think aloud approach. Although this is a useful method, it is dependent on ability to describe and verbalise the reasoning process. More nursing research is needed to explore the clinical reasoning process. Investment in teaching and learning methods is needed to enhance clinical reasoning skills in nurses.

  9. 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

  10. Connecting Distance Learning Communities to Research via Virtual Collaboratories: A Case Study from Library and Information Science

    Science.gov (United States)

    Rebmann, Kristen

    2012-01-01

    This case study reports on patterns of participation in a virtual collaboratory organised around goals associated with the involvement of graduate students in research and writing projects. Traditionally, distance learning classrooms have been devoted to teaching content matter (in a virtual context) yet this case study reports on the use of…

  11. Substance Use among Adolescents Involved in Bullying: A Cross-Sectional Multilevel Study.

    Science.gov (United States)

    Gaete, Jorge; Tornero, Bernardita; Valenzuela, Daniela; Rojas-Barahona, Cristian A; Salmivalli, Christina; Valenzuela, Eduardo; Araya, Ricardo

    2017-01-01

    Being involved in bullying as a victim or perpetrator could have deleterious health consequences. Even though there is some evidence that bullies and victims of bullying have a higher risk for drug use, less is known about bystanders. The aim of this research was to study the association between bullying experience (as victims, bullies, or bystanders) and substance use. We gathered complete information from a nationally representative sample of 36,687 students (51.4% female) attending 756 schools in Chile. We used a self-reported questionnaire which was developed based on similar instruments used elsewhere. This questionnaire was piloted and presented to an expert panel for approval. We used multilevel multivariate logistic regression analyses, controlling for several variables at the individual (e.g., school membership, parental monitoring) and school levels (e.g., school type, school denomination). This study shows that bullies and bully-victims have a high risk for cigarette, alcohol, and cannabis use than bystanders. This is one of the few studies exploring the association between witnessing bullying and substance use. These findings add new insights to the study of the co-occurrence of bullying and substance use. Other factors, such as higher academic performance, stronger school membership, and better parental monitoring reduced the risk of any substance use, while the experience of domestic violence and the perception of social disorganization in the neighborhood, increased the risk. These findings may help the design of preventive interventions.

  12. Substance Use among Adolescents Involved in Bullying: A Cross-Sectional Multilevel Study

    Directory of Open Access Journals (Sweden)

    Jorge Gaete

    2017-06-01

    Full Text Available Being involved in bullying as a victim or perpetrator could have deleterious health consequences. Even though there is some evidence that bullies and victims of bullying have a higher risk for drug use, less is known about bystanders. The aim of this research was to study the association between bullying experience (as victims, bullies, or bystanders and substance use. We gathered complete information from a nationally representative sample of 36,687 students (51.4% female attending 756 schools in Chile. We used a self-reported questionnaire which was developed based on similar instruments used elsewhere. This questionnaire was piloted and presented to an expert panel for approval. We used multilevel multivariate logistic regression analyses, controlling for several variables at the individual (e.g., school membership, parental monitoring and school levels (e.g., school type, school denomination. This study shows that bullies and bully-victims have a high risk for cigarette, alcohol, and cannabis use than bystanders. This is one of the few studies exploring the association between witnessing bullying and substance use. These findings add new insights to the study of the co-occurrence of bullying and substance use. Other factors, such as higher academic performance, stronger school membership, and better parental monitoring reduced the risk of any substance use, while the experience of domestic violence and the perception of social disorganization in the neighborhood, increased the risk. These findings may help the design of preventive interventions.

  13. Clinical research involving minors in international and serbian regulations.

    Science.gov (United States)

    Planojević, Nina; Zivojinović, Dragica

    2013-07-01

    Participation in clinical trials can be useful for the health of a person, in who it is conducted, but it does not have to be - it can even be harmful. Therefore, primary motive to accept such risk is humanity and human wish to contribute to the progress of medicine; this is expressed by personal consent. The consent, however, can be an expression of personal humanity, and for this, it is not logical that someone can give consent on behalf of someone else, as it is done by a legally authorized representative on behalf of a minor. Therefore, authors raise 3 questions: What are the reasons to consider representative's consent acceptable? How should a model of regulations look like in order to provide the most complete possible protection to a minor? Is actual regulation of minors' position within international and Serbian law, analyzed here by authors for their specific solutions, acceptable? Representative's consent is acceptable only for therapeutic research, because these can bring benefits to everyone's health, including a minor in which those are conducted - this is an acceptable (secondary) motive of participation in the research. Expression of humanity on other's behalf, typical for non-therapeutic research, is not acceptable; this makes ban of minors' participation in non-therapeutic research more appropriate regulation model. International regulations are not in accordance to results presented in the paper for allowing participation of minors both in therapeutic and non-therapeutic research. Serbian regulation is closer to the most acceptable regulation model.

  14. Analyzing injury severity factors at highway railway grade crossing accidents involving vulnerable road users: A comparative study.

    Science.gov (United States)

    Ghomi, Haniyeh; Bagheri, Morteza; Fu, Liping; Miranda-Moreno, Luis F

    2016-11-16

    The main objective of this study is to identify the main factors associated with injury severity of vulnerable road users (VRUs) involved in accidents at highway railroad grade crossings (HRGCs) using data mining techniques. This article applies an ordered probit model, association rules, and classification and regression tree (CART) algorithms to the U.S. Federal Railroad Administration's (FRA) HRGC accident database for the period 2007-2013 to identify VRU injury severity factors at HRGCs. The results show that train speed is a key factor influencing injury severity. Further analysis illustrated that the presence of illumination does not reduce the severity of accidents for high-speed trains. In addition, there is a greater propensity toward fatal accidents for elderly road users compared to younger individuals. Interestingly, at night, injury accidents involving female road users are more severe compared to those involving males. The ordered probit model was the primary technique, and CART and association rules act as the supporter and identifier of interactions between variables. All 3 algorithms' results consistently show that the most influential accident factors are train speed, VRU age, and gender. The findings of this research could be applied for identifying high-risk hotspots and developing cost-effective countermeasures targeting VRUs at HRGCs.

  15. The cost of long-term follow-up of high-risk infants for research studies.

    Science.gov (United States)

    Doyle, Lex W; Clucas, Luisa; Roberts, Gehan; Davis, Noni; Duff, Julianne; Callanan, Catherine; McDonald, Marion; Anderson, Peter J; Cheong, Jeanie L Y

    2015-10-01

    Neonatal intensive care is expensive, and thus it is essential that its long-term outcomes are measured. The costs of follow-up studies for high-risk children who survive are unknown. This study aims to determine current costs for the assessment of health and development of children followed up in our research programme. Costs were determined for children involved in the research follow-up programme at the Royal Women's Hospital, Melbourne, over the 6-month period between 1st January 2012 and 30th June 2012. The time required for health professionals involved in assessments in early and later childhood was estimated, and converted into dollar costs. Costs for equipment and data management were added. Estimated costs were compared with actual costs of running the research follow-up programme. A total of 134 children were assessed over the 6-month period. The estimated average cost per child assessed was $1184, much higher than was expected. The estimated cost to assess a toddler was $1149, whereas for an 11-year-old it was $1443, the difference attributable to the longer psychological and paediatric assessments. The actual average cost per child assessed was $1623. The shortfall of $439 between the actual and estimated average costs per child arose chiefly because of the need to pay staff even when participants were late or failed to attend. The average costs of assessing children at each age for research studies are much higher than expected. These data are useful for planning similar long-term follow-up assessments for high-risk children. © 2015 The Authors. Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

  16. Protocol for a systematic review on the extent of non-publication of research studies and associated study characteristics.

    Science.gov (United States)

    Portalupi, Susan; von Elm, Erik; Schmucker, Christine; Lang, Britta; Motschall, Edith; Schwarzer, Guido; Gross, Isabel T; Scherer, Roberta W; Bassler, Dirk; Meerpohl, Joerg J

    2013-01-09

    Methodological research has found that non-published studies often have different results than those that are published, a phenomenon known as publication bias. When results are not published, or are published selectively based on the direction or the strength of the findings, healthcare professionals and consumers of healthcare cannot base their decision-making on the full body of current evidence. As part of the OPEN project (http://www.open-project.eu) we will conduct a systematic review with the following objectives:1. To determine the proportion and/or rate of non-publication of studies by systematically reviewing methodological research projects that followed up a cohort of studies that a. received research ethics committee (REC) approval,b. were registered in trial registries, orc. were presented as abstracts at conferences.2. To assess the association of study characteristics (for example, direction and/or strength of findings) with likelihood of full publication.To identify reports of relevant methodological research projects we will conduct electronic database searches, check reference lists, and contact experts. Published and unpublished projects will be included. The inclusion criteria are as follows:a. RECs: methodological research projects that examined the subsequent proportion and/or rate of publication of studies that received approval from RECs;b. Trial registries: methodological research projects that examine the subsequent proportion and/or rate of publication of studies registered in trial registries;c. Conference abstracts: methodological research projects that examine the subsequent proportion and/or rate of full publication of studies which were initially presented at conferences as abstracts. Proportion/rate of published studies; time to full publication (mean/median; cumulative publication rate by time). Association of study characteristics with full publication.The different questions (a, b, and c) will be investigated separately. Data

  17. The relevance and implications of organizational involvement for serious mental illness populations.

    Science.gov (United States)

    Treichler, Emily B H; Evans, Eric A; Johnson, J Rock; O'Hare, Mary; Spaulding, William D

    2015-07-01

    Consumer involvement has gained greater prominence in serious mental illness (SMI) because of the harmonious forces of new research findings, psychiatric rehabilitation, and the recovery movement. Previously conceived subdomains of consumer involvement include physical involvement, social involvement, and psychological involvement. We posit a fourth subdomain, organizational involvement. We have operationally defined organizational involvement as the involvement of mental health consumers in activities and organizations that are relevant to the mental health aspect of their identities from an individual to a systemic level across arenas relevant to mental health. This study surveyed adults with SMI regarding their current level of organizational involvement along with their preferences and beliefs about organizational involvement. Additionally, a path model was conducted to understand the relationships between domains of consumer involvement. Although participants reported wanting to be involved in identified organizational involvement activities and believing it was important to be involved in these kinds of activities, organizational involvement was low overall. The path model indicated that psychological involvement among other factors influence organizational involvement, which informed our suggestions to improve organizational involvement among people with SMI. Successful implementation must be a thoroughly consumer-centered approach creating meaningful and accessible involvement opportunities. Our study and prior studies indicate that organizational involvement and other subdomains of consumer involvement are key to the health and wellbeing of consumers, and therefore greater priority should be given to interventions aimed at increasing these essential domains. (c) 2015 APA, all rights reserved).

  18. Interdisciplinary Collaboration: Librarian Involvement in Grant Projects

    Science.gov (United States)

    Brandenburg, Marci D.; Cordell, Sigrid Anderson; Joque, Justin; MacEachern, Mark P.; Song, Jean

    2017-01-01

    Librarians are excellent research collaborators, although librarian participation is not usually considered, thereby making access to research funds difficult. The University of Michigan Library became involved in the university's novel funding program, MCubed, which supported innovative interdisciplinary research on campus, primarily by funding…

  19. Design-based research – issues in connecting theory, research and practice

    DEFF Research Database (Denmark)

    Kolmos, Anette

    2015-01-01

    the gap. But is this as easy as it sounds? The purpose of the article is to identify and discuss issues involved in applying DBR. The article is based on methodology chapters and essays from three PhD studies applying the DBR framework to implement problem and project based learning (PBL). The findings......During the last 20 years, design-based research (DBR) has become a popular methodology for connecting educational theory, research and practice. The missing link between educational theory, research and educational practice is an ongoing issue and DBR is seen as an integrated methodology to bridge...... indicate several key issues at both the scientific and personal level. Scientifically, the main issues are contribution to theory and the role of the researcher. At the personal level, it is an investment beyond normal research procedures to involve yourself as a researcher in curriculum change....

  20. Evaluating patient and public involvement in health research: from theoretical model to practical workshop.

    Science.gov (United States)

    Gibson, Andy; Welsman, Jo; Britten, Nicky

    2017-10-01

    There is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. The three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. The framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future. © 2017 The Authors Health Expectations published by John Wiley & Sons Ltd.

  1. Research attitudes and experiences of radiation therapists

    International Nuclear Information System (INIS)

    Scutter, Sheila; Halkett, Georgia

    2003-01-01

    An important factor in professional status is the ongoing development of the area as a result of research findings. However, involvement by radiation therapists in research, publication and higher degree study is limited. The aim of the current study was to investigate the attitudes of radiation therapists towards research, and to investigate the major factors contributing to their limited participation in research. To achieve this, an anonymous questionnaire was developed and distributed to radiation therapists working at the Royal Adelaide Hospital (RAH). The study found that radiation therapists at the RAH are interested in research but there are several factors that limit their involvement. These factors include limited knowledge about research processes, lack of support and lack of time to undertake research. Copyright (2003) Australian Institute of Radiography

  2. Breaking ground in cross-cultural research on the fear of being laughted at (gelotophobia): A multi-national study involving 73 countries

    Czech Academy of Sciences Publication Activity Database

    Proyer, R.T.; Ruch, W.; Ali, N.S.; Al-Olimat, H. S.; Amemiya, T.; Adal, T.A.; Ansari, S. A.; Arhar, Š.; Asem, G.; Baudin, N.; Bawab, S.; Bergen, D.; Brdar, I.; Brites, R.; Brunner-Sciarra, M.; Carrell, A.; Dios, H.C.; Celik, M.; Ceschi, G.; Chang, K.; Cheryomukhin, A.; Chik, M.P.Y.; Chlopicki, W.; Cranney, J.; Dahourou, D.; Doosje, S.; Dore, M.; El-Arousy, N.; Ficková, E.; Führ, M.; Gallivan, J.; Geling, H.; Germikova, L.; Goh, A.; Gonzáles, R.D.; Ho, S.K.; Hřebíčková, Martina; Jaime, B.; Hertzberg Kaare, B.; Kamble, S.; Kazarian, S.; Kerkkänen, P.; Klementová, M.; Kobozeva, I.M.; Kovjanic, S.; Kumaraswamy, N.; Lampert, M.; Liao, Ch.; Levesque, M.; Loizou, L.; Loving, R.D.; Lyttle, J.; Machline, V.C.; McGoldrick, S.; McRorie, M.; Min, L.; Mottus, R.; Munyae, M.; Navia, C.E.; Nkhalamba, M.; Pedrini, P.P.; Petkova, M.; Platt, T.; Popa, D-E.; Radomska, A.; Rashid, T.; Rawlings, D.; Rubio, V.J.; Samson, A.C.; Sarid, O.; Shams, S.; Sisokohm, S.; Smári, J.; Sneddon, I.; Snikhovska, I.; Stephanenko, E.A.; Stokenberga, L.; Stuer, B.; Tanoto, Y.S.R.; Tapia, L.; Taylor, J.; Thibault, P.; Thompson, A.; Thőrn, H.; Toyota, H.; Ujlaky, J.; Vanno, V.; van der Westhuizen, B.; Wijayathilake, D.; Wong, P.S.O.; Wycoff, E.B.; Yeun, E.J.

    2009-01-01

    Roč. 22, 1/2 (2009), s. 253-279 ISSN 0933-1719 R&D Projects: GA ČR GA406/07/1561 Institutional research plan: CEZ:AV0Z70250504 Keywords : cross -cultural comparisons * gelotophobia * humor * multi-national study Subject RIV: AN - Psychology Impact factor: 0.771, year: 2009

  3. Recruitment of Yoruba families from Nigeria for genetic research: experience from a multisite keloid study.

    Science.gov (United States)

    Olaitan, Peter B; Odesina, Victoria; Ademola, Samuel; Fadiora, Solomon O; Oluwatosin, Odunayo M; Reichenberger, Ernst J

    2014-09-02

    More involvement of sub-Saharan African countries in biomedical studies, specifically in genetic research, is needed to advance individualized medicine that will benefit non-European populations. Missing infrastructure, cultural and religious beliefs as well as lack of understanding of research benefits can pose a challenge to recruitment. Here we describe recruitment efforts for a large genetic study requiring three-generation pedigrees within the Yoruba homelands of Nigeria. The aim of the study was to identify genes responsible for keloids, a wound healing disorder. We also discuss ethical and logistical considerations that we encountered in preparation for this research endeavor. Protocols for this bi-national intercultural study were approved by the Institutional Review Board (IRB) in the US and the ethics committees of the Nigerian institutions for consideration of cultural differences. Principles of community based participatory research were employed throughout the recruitment process. Keloid patients (patient advisors), community leaders, kings/chiefs and medical directors were engaged to assist the research teams with recruitment strategies. Community meetings, church forums, and media outlets (study flyers, radio and TV announcements) were utilized to promote the study in Nigeria. Recruitment of research participants was conducted by trained staff from the local communities. Pedigree structures were re-analyzed on a regular basis as new family members were recruited and recruitment challenges were documented. Total recruitment surpassed 4200 study participants over a 7-year period including 79 families with complete three-generation pedigrees. In 9 families more than 20 family members participated, however, in 5 of these families, we encountered issues with pedigree structure as members from different branches presented inconsistent family histories. These issues were due to the traditional open family structure amongst the Yoruba and by beliefs in

  4. Parent Involvement: Turning Up the Heat

    Science.gov (United States)

    Wherry, John H.

    2004-01-01

    Research shows that parent involvement makes a significant difference in children's achievement, especially during elementary and middle school. Even though the school year is well underway, there is still plenty of time to make this your school's best year ever for parent involvement. Here are some of the most effective strategies I've come…

  5. Review of research grant allocation to psychosocial studies in diabetes research

    DEFF Research Database (Denmark)

    Jones, A; Vallis, Michael; Cooke, Debbie

    2016-01-01

    AIMS: To estimate and discuss the allocation of diabetes research funds to studies with a psychosocial focus. METHODS: Annual reports and funded-research databases from approximately the last 5 years (if available) were reviewed from the following representative funding organizations, the American...... Diabetes Association, the Canadian Diabetes Association, Diabetes Australia, Diabetes UK, the Dutch Diabetes Research Foundation and the European Foundation for the Study of Diabetes, in order to estimate the overall proportion of studies allocated research funding that had a psychosocial focus. RESULTS......: An estimated mean of 8% of funded studies from our sample were found to have a psychosocial focus. CONCLUSIONS: The proportion of funded studies with a psychosocial focus was small, with an estimated mean ratio of 17:1 observed between funded biomedical and psychosocial studies in diabetes research. While...

  6. Unveiling Research Agendas: a study of the influences on research problem selection among academic researchers

    Energy Technology Data Exchange (ETDEWEB)

    Bianco, M.; Sutz, J.

    2016-07-01

    Research problem selection is central to the dynamics of scientific knowledge production. Research agendas result from the selection of research problems and the formulation of individual and/or collective academic strategies to address them. But, why researchers study what they study? This paper presents incipient research focused on the way different factors influence the construction of academic research agendas. It takes a researcher-oriented approach relying on opinions and perspectives of a wide range of researchers in all fields of knowledge. The empirical work is carried out in Uruguay, a country in the periphery of mainstream science, whose academic community struggles in search of a balance between the requirements of the world community of scholars and the demands from different national stakeholders. The methodology and research results from this study may be relevant to other countries, at different peripheries. Further, understanding the interplay of influences that shape research agendas is an important tool for policy analysis and planning everywhere. (Author)

  7. An action research study of collaborative strategic reading in English with Saudi medical students

    OpenAIRE

    Al-Roomy, Muhammad

    2013-01-01

    This is an investigative action research study on ways of improving the reading comprehension skills of Arabic medical school students. The study first analysed the difficulties of teaching and learning English and reading in English in a Saudi university medical college. An intervention was planned and implemented based on Collaborative Strategic Reading (CSR –Klingner and Vaughn, 1996). This involved using group work to teach explicitly a set of reading strategies to a class of students who...

  8. Combining PPI with qualitative research to engage 'harder-to-reach' populations: service user groups as co-applicants on a platform study for a trial.

    Science.gov (United States)

    Morgan, Heather; Thomson, Gill; Crossland, Nicola; Dykes, Fiona; Hoddinott, Pat

    2016-01-01

    It is recommended that research studies are carried out with or by patients and the public through their involvement from the beginning and in as many stages as possible (known as PPI). Some studies formally invite patients and the public to participate in interviews and focused group discussions to collect views about topics (known as qualitative research). In our study on financial incentives for giving up smoking in pregnancy and breastfeeding, we combined both PPI and qualitative research to include the views of women with a range of experiences of smoking and breastfeeding. We involved two mother and baby groups in disadvantaged areas of North East Scotland and North West England as research partners on our team. First, we asked members to comment on our research plans and documents, which is standard PPI. Second, we asked members to participate in voice recorded discussions, contributing to qualitative research data. These discussions revealed different views from those that we heard through research interviews. They allowed us to develop more relevant research tools and resources. Members also helped us to identify people outside the groups who we could interview. Combining involvement and participation helped us to include the views of a wide range of women from 'harder-to-reach' groups who don't usually take part in research. This was important because the research was intended for women who could benefit from incentives to stop smoking in pregnancy and breastfeed, often present in such groups. Positive continuing relationships and trust improved on involvement or participation alone. ᅟ. Patient and public involvement (PPI) in all research studies is recommended from the earliest point and in as many stages as possible. Qualitative research is also recommended in the early stages of designing complex intervention trials. Combining both together might enable inclusion of 'harder-to-reach' perspectives from the target population(s), particularly when the

  9. Relational Research and Organisation Studies

    DEFF Research Database (Denmark)

    Madsen, Charlotte Øland; Larsen, Mette Vinther; Hansen, Lone Hersted

    , analyzing organizational dialoguing, and polyphonic future-forming ways of writing up research.  Relational Research and Organisation Studies does not only present and discuss guidelines for practice at a onto-epistemological level but also presents and discusses concrete cases of research projects building...... on relational constructionist ideas. Furthermore, excerpts of data are presented and analyzed in order to explain the co-constructed processes of the inquiries more in detail. Relational Research and Organisation Studies invites the reader into the process of planning and carrying out relational constructionist......This volume lays out a variety of ways of engaging in research projects focused on exploring the everyday relational practices of organizing and leading is presented. The main focus is through elaborate examples from the author’s own research to further the understanding of how it is possible...

  10. Factors Affecting Adolescents' Involvement in Cyberbullying: What Divides the 20% from the 80%?

    Science.gov (United States)

    Shin, Namin; Ahn, Hwasil

    2015-07-01

    Despite some variations among cyberbullying studies, about 20% of the youth population surveyed appears to be involved in cyberbullying. Coincidentally, the current study found that exactly 20% of the students surveyed were involved in cyberbullying as bullies (7.8%), victims (7.5%), and bully/victims (4.7%). What divides those 20% from the 80% of noninvolved students? This study aimed to produce a parsimonious and accurate model that can predict the occurrence of involvement in cyberbullying among youth. Data were collected from a questionnaire survey administered to 1,036 students enrolled in secondary schools in South Korea. Stepwise logistic regression (SLR) was carried out to predict the dichotomous dependent variable (involved/noninvolved) with 10 independent variables grouped into three categories: (a) demographic, (b) media-related, and (c) school and psychology factors. The result of the SLR analysis yielded a four-step model including the variables of cyber-confidence, weekday game time, mobile activities, and age as being significant in explaining the 20/80 division (model χ(2)=34.306, df=4, pcyberbullying than other students. In particular, the construct of cyber-confidence calls for further elaboration and research, given its controversial function with respect to adolescents' involvement in cyberbullying. Also, this study may bring about insights into practical considerations needed for concerned researchers, teachers, and parents to identify who is inside the group involved in cyberbullying so as to help the participating adolescents escape from the circle of cyberbullying.

  11. Ethics, Ethical Human Research and Human Research Ethics Committees

    Science.gov (United States)

    Lindorff, Margaret

    2010-01-01

    Non-medical research involves the same issues of justice, beneficence, and respect for persons that apply to non-medical research. It also may involve risk of harm to participants, and conflicts of interest for researchers. It is therefore not possible to argue that such research should be exempt from ethical review. This paper argues that…

  12. A vignette study to examine health care professionals' attitudes towards patient involvement in error prevention.

    Science.gov (United States)

    Schwappach, David L B; Frank, Olga; Davis, Rachel E

    2013-10-01

    Various authorities recommend the participation of patients in promoting patient safety, but little is known about health care professionals' (HCPs') attitudes towards patients' involvement in safety-related behaviours. To investigate how HCPs evaluate patients' behaviours and HCP responses to patient involvement in the behaviour, relative to different aspects of the patient, the involved HCP and the potential error. Cross-sectional fractional factorial survey with seven factors embedded in two error scenarios (missed hand hygiene, medication error). Each survey included two randomized vignettes that described the potential error, a patient's reaction to that error and the HCP response to the patient. Twelve hospitals in Switzerland. A total of 1141 HCPs (response rate 45%). Approval of patients' behaviour, HCP response to the patient, anticipated effects on the patient-HCP relationship, HCPs' support for being asked the question, affective response to the vignettes. Outcomes were measured on 7-point scales. Approval of patients' safety-related interventions was generally high and largely affected by patients' behaviour and correct identification of error. Anticipated effects on the patient-HCP relationship were much less positive, little correlated with approval of patients' behaviour and were mainly determined by the HCP response to intervening patients. HCPs expressed more favourable attitudes towards patients intervening about a medication error than about hand sanitation. This study provides the first insights into predictors of HCPs' attitudes towards patient engagement in safety. Future research is however required to assess the generalizability of the findings into practice before training can be designed to address critical issues. © 2012 John Wiley & Sons Ltd.

  13. Undergraduate research involving human subjects should not be granted ethical approval unless it is likely to be of publishable quality.

    Science.gov (United States)

    Gallagher, Cathal T; McDonald, Lisa J; McCormack, Niamh P

    2014-06-01

    Small-scale research projects involving human subjects have been identified as being effective in developing critical appraisal skills in undergraduate students. In deciding whether to grant ethical approval to such projects, university research ethics committees must weigh the benefits of the research against the risk of harm or discomfort to the participants. As the learning objectives associated with student research can be met without the need for human subjects, the benefit associated with training new healthcare professionals cannot, in itself, justify such risks. The outputs of research must be shared with the wider scientific community if it is to influence future practice. Our survey of 19 UK universities indicates that undergraduate dissertations associated with the disciplines of medicine, dentistry and pharmacy are not routinely retained in their library catalogues, thus closing a major avenue to the dissemination of their findings. If such research is unlikely to be published in a peer-reviewed journal, presented at a conference, or otherwise made available to other researchers, then the risks of harm, discomfort or inconvenience to participants are unlikely to be offset by societal benefits. Ethics committees should be satisfied that undergraduate research will be funnelled into further research that is likely to inform clinical practice before granting ethical approval.

  14. Basic Science Research and the Protection of Human Research Participants

    Science.gov (United States)

    Eiseman, Elisa

    2001-03-01

    Technological advances in basic biological research have been instrumental in recent biomedical discoveries, such as in the understanding and treatment of cancer, HIV/AIDS, and heart disease. However, many of these advances also raise several new ethical challenges. For example, genetic research may pose no physical risk beyond that of obtaining the initial blood sample, yet it can pose significant psychological and economic risks to research participants, such as stigmatization, discrimination in insurance and employment, invasion of privacy, or breach of confidentiality. These harms may occur even when investigators do not directly interact with the person whose DNA they are studying. Moreover, this type of basic research also raises broader questions, such as what is the definition of a human subject, and what kinds of expertise do Institutional Review Boards (IRBs) need to review the increasingly diverse types of research made possible by these advances in technology. The National Bioethics Advisory Commission (NBAC), a presidentially appointed federal advisory committee, has addressed these and other ethical, scientific and policy issues that arise in basic science research involving human participants. Two of its six reports, in particular, have proposed recommendations in this regard. "Research Involving Human Biological Materials: Ethical and Policy Guidance" addresses the basic research use of human tissues, cells and DNA and the protection of human participants in this type of research. In "Ethical and Policy Issues in the Oversight of Human Research" NBAC proposes a definition of research involving human participants that would apply to all scientific disciplines, including physical, biological, and social sciences, as well as the humanities and related professions, such as business and law. Both of these reports make it clear that the protection of research participants is key to conducting ethically sound research. By ensuring that all participants in

  15. Ethical issues in recruitment of "healthy volunteers": study of a clinical research organisation in Hyderabad.

    Science.gov (United States)

    Krishna, Shilpa; Prasad, N Purendra

    2014-01-01

    This paper raises some of the ethical issues involved in the recruitment of healthy volunteers (HVs) by clinical research organizations (CROs) for bioavailability and bioequivalent (BA/BE) studies. It also explores the underlying reasons for the participation of the HVs and their interaction with the CROs. The findings are based on the data collected from 50 HVs participating in a BA/BE study conducted by a CRO in Hyderabad and from the key officials involved in it. The findings indicate the existence of various complex networks, throw some light on the role of middlemen ("Anna") and the negotiation process, and give us an insight into the social norms and values that compelled the HVs to participate in the study. The paper offers a critical analysis of a few ethical concerns.

  16. Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study.

    Science.gov (United States)

    Grönqvist, Helena; Olsson, Erik Martin Gustaf; Johansson, Birgitta; Held, Claes; Sjöström, Jonas; Lindahl Norberg, Annika; Hovén, Emma; Sanderman, Robbert; van Achterberg, Theo; von Essen, Louise

    2017-05-23

    U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce. The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment. Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached. The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity. Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way. ©Helena Grönqvist, Erik Martin Gustaf Olsson, Birgitta Johansson, Claes Held, Jonas Sjöström, Annika Lindahl Norberg, Emma Hovén, Robbert Sanderman, Theo van Achterberg, Louise von Essen. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 23.05.2017.

  17. The role of high-involvement work practices and professional self-image in nursing recruits' turnover: A three-year prospective study.

    Science.gov (United States)

    Chênevert, Denis; Jourdain, Geneviève; Vandenberghe, Christian

    2016-01-01

    The retention of young graduate nurses has become a major management challenge among hospitals in Western countries, which is amplified in a context of aging of populations and an increasing demand for services from patients. Moreover, as it has been reported that 50% of experienced nurses do not recommend a career in nursing, it is likely that retention problems occur not only at the level of the organization, but also at the level of the nursing profession. Although research has identified some predictors of nurse turnover, it is unclear which factors influence nurses' turnover from the organization and from the profession and how these factors interrelate with one another over time. The present study extends previous research on nurse turnover by looking at the combined effects of nurses' pre-entry expectations, perceived high-involvement work practices, and professional self-image, on intended and actual turnover from the organization and the profession. A prospective, longitudinal study of a sample of 160 graduated nurses affiliated with the Quebec Nurses' Association, Canada, was conducted. Participants were surveyed at three points in time, spread over a 3-year period. Graduated nurses' pre-entry expectations and professional self-image were surveyed at graduation (Time 1), while perceived high-involvement work practices, professional self-image, and intention to leave the organization and the profession were captured six months following nurses' entry into the labor market (Time 2). Finally, participants were surveyed with respect to organizational and professional turnover three years after the Time 2 survey (Time 3). Structural equations modeling was used to examine the structure of the measures and the relationships among the constructs. Although pre-entry expectations had no effect, perceived high-involvement work practices were positively related to Time 2, professional self-image (controlling for pre-entry professional self-image). Moreover, high-involvement

  18. Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study.

    Science.gov (United States)

    Lairumbi, Geoffrey M; Parker, Michael; Fitzpatrick, Raymond; Mike, English C

    2011-10-03

    The concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya. We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups. Our study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research. This study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best

  19. Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study

    Directory of Open Access Journals (Sweden)

    Fitzpatrick Raymond

    2011-10-01

    Full Text Available Abstract Background The concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research. The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya. Methods We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups. Results Our study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research. Conclusion This study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which

  20. Using mixed methods research in medical education: basic guidelines for researchers.

    Science.gov (United States)

    Schifferdecker, Karen E; Reed, Virginia A

    2009-07-01

    Mixed methods research involves the collection, analysis and integration of both qualitative and quantitative data in a single study. The benefits of a mixed methods approach are particularly evident when studying new questions or complex initiatives and interactions, which is often the case in medical education research. Basic guidelines for when to use mixed methods research and how to design a mixed methods study in medical education research are not readily available. The purpose of this paper is to remedy that situation by providing an overview of mixed methods research, research design models relevant for medical education research, examples of each research design model in medical education research, and basic guidelines for medical education researchers interested in mixed methods research. Mixed methods may prove superior in increasing the integrity and applicability of findings when studying new or complex initiatives and interactions in medical education research. They deserve an increased presence and recognition in medical education research.

  1. Does psychological functioning mediate the relationship between bullying involvement and weight loss preoccupation in adolescents? A two-stage cross-sectional study

    OpenAIRE

    Lee, Kirsty; Guy, Alexa; Dale, Jeremy; Wolke, Dieter

    2017-01-01

    Background Adolescent bullying is associated with a range of adversities for those who are bullied i.e., victims and bully-victims (e.g., those who bully others and get victimised), including reduced psychological functioning and eating disorder symptoms. Bullies are generally well-adjusted psychologically, but previous research suggests that bullies may also engage in problematic diet behaviours. This study investigates a) whether adolescents involved in bullying (bullies, victims, bully-vic...

  2. Empirical Research In Engineering Design

    DEFF Research Database (Denmark)

    Ahmed, Saeema

    2007-01-01

    Increasingly engineering design research involves the use of empirical studies that are conducted within an industrial environment [Ahmed, 2001; Court 1995; Hales 1987]. Research into the use of information by designers or understanding how engineers build up experience are examples of research...... of research issues. This paper describes case studies of empirical research carried out within industry in engineering design focusing upon information, knowledge and experience in engineering design. The paper describes the research methods employed, their suitability for the particular research aims...

  3. Reflections on the United States National Institutes of Health draft guidelines for research involving human pluripotent stem cells--theological perspective.

    Science.gov (United States)

    Sotis, J J

    2000-01-01

    Since the human embryonic stem cell research involves destruction of human embryos and, therefore, hinges on the fundamental question of the status of the embryo, it is essential to examine this status carefully in order to establish fitting guidelines for research. The US National Institutes of Health has proposed its own guidelines on the matter recently (1999). The document, rooted in current pluralistic perspectives in moral philosophy (or bioethics), is criticised in this paper as morally inadequate. The argumentation of the criticism stems from the theological perspective on human personhood, which focuses on a continuity of personal identity from embryos to adult human beings. An additional concern for the author is the moral complicity in which the research dependent upon the destruction of human embryonic life is sanctioned.

  4. Influence of Involvement in Sports on Students' Involvement in ...

    African Journals Online (AJOL)

    This study was carried out to establish whether students' involvement in sports activities affected their involvement in academic activities. Data were collected using a self-administered questionnaire and analysed using percentages and means. Spearman's correlation coefficient was used to test the hypotheses that guided ...

  5. Qualitative and Mixed Methods Social Media Research

    Directory of Open Access Journals (Sweden)

    Chareen L. Snelson

    2016-02-01

    Full Text Available Social media technologies have attracted substantial attention among many types of users including researchers who have published studies for several years. This article presents an overview of trends in qualitative and mixed methods social media research literature published from 2007 through 2013. A collection of 229 qualitative studies were identified through a systematic literature review process. A subset of 55 of these articles report studies involving a combination of qualitative and quantitative methods. Articles were reviewed, analyzed, and coded through a qualitative content analysis approach. Overall trends are presented with respect to the entire collection of articles followed by an analysis of mixed methods research approaches identified in the subset of 55 studies. The most commonly used research approaches involved collecting data from people through interview, focus group, and survey methodologies. Content analysis was the second most commonly used approach whereby researchers use Facebook posts, Tweets (Twitter posts, YouTube videos, or other social media content as a data source. Many of the studies involving combinations of quantitative and qualitative data followed a design resembling Creswell and Plano Clark’s basic mixed methods typology (e.g., convergent parallel, explanatory sequential, and exploratory sequential.

  6. The Function of Electronic Communication Devices in Assisting Parental Involvement in Middle Schools

    Science.gov (United States)

    Koch, Cotton S.

    2010-01-01

    The importance of home-to-school and school-to-home communication and parental involvement is well documented by researchers and acknowledged by practitioners. A number of earlier studies argue that there is a positive association between two-way communication, parental involvement, and student achievement at all levels of K-12 education. However,…

  7. Mothers' Reports of Their Involvement in Early Intensive Behavioral Intervention

    Science.gov (United States)

    Granger, Stephanie; des Rivieres-Pigeon, Catherine; Sabourin, Gabrielle; Forget, Jacques

    2012-01-01

    Although numerous studies examine the effectiveness of intensive behavioral intervention programs (EIBI) for young children with autism, few focus on the family aspect of the program. In particular, involvement of mothers in the program, which is strongly recommended, is the subject of only a small number of studies. The goal of this research is…

  8. Managing Astronomy Research Data: Case Studies of Big and Small Research Projects

    Science.gov (United States)

    Sands, Ashley E.

    2015-01-01

    Astronomy data management refers to all actions taken upon data over the course of the entire research process. It includes activities involving the collection, organization, analysis, release, storage, archiving, preservation, and curation of research data. Astronomers have cultivated data management tools, infrastructures, and local practices to ensure the use and future reuse of their data. However, new sky surveys will soon amass petabytes of data requiring new data management strategies.The goal of this dissertation, to be completed in 2015, is to identify and understand data management practices and the infrastructure and expertise required to support best practices. This will benefit the astronomy community in efforts toward an integrated scholarly communication framework.This dissertation employs qualitative, social science research methods (including interviews, observations, and document analysis) to conduct case studies of data management practices, covering the entire data lifecycle, amongst three populations: Sloan Digital Sky Survey (SDSS) collaboration team members; Individual and small-group users of SDSS data; and Large Synoptic Survey Telescope (LSST) collaboration team members. I have been observing the collection, release, and archiving of data by the SDSS collaboration, the data practices of individuals and small groups using SDSS data in journal articles, and the LSST collaboration's planning and building of infrastructure to produce data.Preliminary results demonstrate that current data management practices in astronomy are complex, situational, and heterogeneous. Astronomers often have different management repertoires for working on sky surveys and for their own data collections, varying their data practices as they move between projects. The multitude of practices complicates coordinated efforts to maintain data.While astronomy expertise proves critical to managing astronomy data in the short, medium, and long term, the larger astronomy

  9. A Systematic Review of Community Health Workers' Role in Occupational Safety and Health Research.

    Science.gov (United States)

    Swanberg, Jennifer E; Nichols, Helen M; Clouser, Jessica M; Check, Pietra; Edwards, Lori; Bush, Ashley M; Padilla, Yancy; Betz, Gail

    2018-03-03

    We systematically reviewed the literature to describe how community health workers (CHWs) are involved in occupational health and safety research and to identify areas for future research and research practice strategies. We searched five electronic databases from July 2015 through July 2016. Inclusion criteria were as follows: (1) study took place in the United States, (2) published as a full peer-review manuscript in English, (3) conducted occupational health and safety research, and (4) CHWs were involved in the research. The majority of 17 included studies took place in the agriculture industry (76%). CHWs were often involved in study implementation/design and research participant contact. Rationale for CHW involvement in research was due to local connections/acceptance, existing knowledge/skills, communication ability, and access to participants. Barriers to CHW involvement in research included competing demands on CHWs, recruitment and training difficulties, problems about research rigor and issues with proper data collection. Involving CHWs in occupational health and safety research has potential for improving inclusion of diverse, vulnerable and geographically isolated populations. Further research is needed to assess the challenges and opportunities of involving CHWs in this research and to develop evidence-based training strategies to teach CHWs to be lay-health researchers.

  10. The academic librarian as co-investigator on an interprofessional primary research team: a case study.

    Science.gov (United States)

    Janke, Robert; Rush, Kathy L

    2014-06-01

    The objective of this study was to explore the role librarians play on research teams. The experiences of a librarian and a faculty member are situated within the wider literature addressing collaborations between health science librarians and research faculty. A case study approach is used to outline the involvement of a librarian on a team created to investigate the best practices for integrating nurses into the workplace during their first year of practice. Librarians contribute to research teams including expertise in the entire process of knowledge development and dissemination including the ability to navigate issues related to copyright and open access policies of funding agencies. The librarian reviews the various tasks performed as part of the research team ranging from the grant application, to working on the initial literature review as well as the subsequent manuscripts that emerged from the primary research. The motivations for joining the research team, including authorship and relationship building, are also discussed. Recommendations are also made in terms of how librarians could increase their participation on research teams. The study shows that librarians can play a key role on interprofessional primary research teams. © 2014 The authors. Health Information and Libraries Journal © 2014 Health Libraries Group.

  11. Family Involvement in School-Based Dysphagia Management

    Science.gov (United States)

    Angell, Maureen E.; Bailey, Rita L.; Nicholson, Joanna K.; Stoner, Julia B.

    2009-01-01

    This article provides a practitioner-friendly synthesis of existing literature on family involvement in the management of dysphagia for school-age. Research reviewed includes family perspectives on programs, therapists, and characteristics that comprise effective family involvement in school-based dysphagia management programs. Also included are…

  12. Addressing Measurement Issues Related to Bullying Involvement

    Science.gov (United States)

    Casper, Deborah M.; Meter, Diana J.; Card, Noel A.

    2015-01-01

    In this article, we address measurement issues related to select aspects of bullying involvement with the goal of moving psychometrically sound measurement practices toward applied bullying research. We first provide a nontechnical introduction to psychometric considerations in measuring bullying involvement, highlighting the importance of…

  13. Patient engagement in the design and execution of urologic oncology research.

    Science.gov (United States)

    Lee, Daniel J; Avulova, Svetlana; Conwill, Ralph; Barocas, Daniel A

    2017-09-01

    There have been significant effort and financial support to engage patients in the design and execution of medical research. However, little is known about the relative benefits or potential impact of involving patients in research, most efficient practices and systems to enhance their involvement, and potential barriers and challenges that are involved with engaging patients. In this review, we will discuss the value of patient centered research, review the challenges that many of these studies faced, and highlight potential future opportunities to enhance patient involvement in urologic research. An English-language literature search was performed in the electronic databases of Medline (PubMed), EMBASE, Web of Science, Google Scholar, the Cochrane Library, and on the Patient Centered Outcomes Research Institute (PCORI) website. Search items included "patient-centered research," "patient-reported outcomes" and "patient engagement" in various combinations. Although PCORI has funded almost 600 projects with $1.6 billion to improve patient centered research, the search revealed 3 studies of patient engagement in the development, management, and execution of urologic oncology research. Patient engagement in the design and execution of medical research can help align research topics to match patient priorities, improve survey and data collection tools, increase patient recruitment and participation in studies, and improve accessibility and dissemination of clinically relevant results from medical research. However, engagement patients in research requires significant investment of time, financial support, and energy from the patients, stakeholders, and researchers to provide mutual benefit. In the three studies in urologic oncology that involved patients, the patients provided a significant impact on the structure of the studies and helped improve the ability of patients to apply the results from the research studies. The benefits to involving patients in research to

  14. Using Action Research Projects to Examine Teacher Technology Integration Practices

    Science.gov (United States)

    Dawson, Kara

    2012-01-01

    This study examined the technology integration practices of teachers involved in a statewide initiative via one cycle of action research. It differs from other studies of teacher technology integration practices because it simultaneously involved and provided direct benefits to teachers and researchers. The study used thematic analysis to provide…

  15. Improving industrial designers work process by involving user research

    DEFF Research Database (Denmark)

    Dai, Zheng; Ómarsson, Ólafur

    2011-01-01

    With changing times, new technologies and more opinionated consumers, the modern industrial designer has found himself in need of fresher and more up to date approaches in his daily work. In a fast moving industry, the designer needs to keep a thinking process of dynamic and subjective attitude...... will give the grounding for believing that the industrial designer needs to adopt user research methods to a level where he can still continue to work under the very nature of industrial design that has made it a successful practice for the last century. The combing of the approaches and attitude will help....... User research is part of user centered design (UCD). UCD has a reputation for subjective and reflective practice. In this paper there are two example cases. One is conducted by a classical industrial design process, and another is costing half of energy and time in user research. These examples...

  16. Families in Assertive Community Treatment (ACT) Teams in Norway: A Cross-Sectional Study on Relatives' Experiences of Involvement and Alienation.

    Science.gov (United States)

    Weimand, B M; Israel, P; Ewertzon, M

    2017-11-10

    International research shows that relatives of people with mental illness are rarely involved by mental health services. Assertive Community Treatment (ACT) has been recently implemented in Norway. The experience of relatives of ACT users is largely unknown. The aim of this study was to explore relatives' experience with ACT-teams in Norway. Data were collected using the family involvement and alienation questionnaire, consisting of experiences of approach, and alienation from the provision of professional care. 38 Relatives participated in this study. A majority experienced a positive approach (openness, confirmation, and cooperation) from the ACT teams, which also was considered better compared to previous services. They considered openness and cooperation as essential aspects from the professionals. Almost half did not feel alienated (powerlessness and social isolation). Higher level of being approached positively was significantly associated with lower level of feeling alienated. The knowledge of what constituted relatives' positive experiences with the ACT teams should be transferred into practice regarding how to form a positive alliance with relatives.

  17. Advancing Translational Space Research Through Biospecimen Sharing: Amplified Impact of Studies Utilizing Analogue Space Platforms

    Science.gov (United States)

    Staten, B.; Moyer, E.; Vizir, V.; Gompf, H.; Hoban-Higgins, T.; Lewis, L.; Ronca, A.; Fuller, C. A.

    2016-01-01

    Biospecimen Sharing Programs (BSPs) have been organized by NASA Ames Research Center since the 1960s with the goal of maximizing utilization and scientific return from rare, complex and costly spaceflight experiments. BSPs involve acquiring otherwise unused biological specimens from primary space research experiments for distribution to secondary experiments. Here we describe a collaboration leveraging Ames expertise in biospecimen sharing to magnify the scientific impact of research informing astronaut health funded by the NASA Human Research Program (HRP) Human Health Countermeasures (HHC) Element. The concept expands biospecimen sharing to one-off ground-based studies utilizing analogue space platforms (e.g., Hindlimb Unloading (HLU), Artificial Gravity) for rodent experiments, thereby significantly broadening the range of research opportunities with translational relevance for protecting human health in space and on Earth.

  18. U.S. dental students' attitudes toward research and science: impact of research experience.

    Science.gov (United States)

    Holman, Shaina Devi; Wietecha, Mateusz S; Gullard, Angela; Peterson, Jon M B

    2014-03-01

    This study aimed to provide a first nationwide assessment of dental students' attitudes toward the importance of research and its integration into the dental curriculum. For this purpose, the American Association for Dental Research National Student Research Group developed an online survey that was distributed to 89 percent of U.S. dental students in May 2012. The survey consisted of twenty-one Likert-type items divided into three groups: importance of research in dentistry, barriers to research involvement, and exposure to research in the dental curriculum. There were 733 responses (3.9 percent response rate), including students in all stages of education representing fifty-eight out of sixty-one dental schools. Age and race/ethnic distributions corresponded with U.S. dental school enrollees. Results showed that 63 percent of respondents had conducted research before matriculation, and of the 34 percent that participated in research during dental school, only 27 percent were newcomers. Respondents strongly agreed that scientific research enabled their progress in dentistry. Inadequate time in the curriculum was an obstacle they perceived to research involvement during dental school. Respondents agreed that dental curricula emphasize evidence-based practices but may be inadequately teaching biostatistics and research methodologies. Students with research experience tended to have stronger positive opinions about the importance of research in dental education. Efforts to foster research in schools have been well received by students, but several issues remain for enriching dental education through greater involvement of students in research.

  19. Parental Engagement: Beyond Parental Involvement in Science Education

    Science.gov (United States)

    St. Louis, Kathleen

    This study critically analyzes parents' complex stories of engagement in school and science education. The purpose is not to essentialize parental involvement, but rather to understand the processes of parental involvement and push forward the current discourse on the engagement of low-income minority and immigrant parents in schools and specifically science education. Employing critical grounded theory methods over a four-year span, this study had three areas of focus. First, voices of marginalized parents in the context of various spaces within the school system are examined. Using a qualitative approach, informal, formal, and research spaces were explored along with how minority parents express voice in these various spaces. Findings indicate parents drew on capital to express voice differently in different spaces, essentially authoring new spaces or the type of engagement in existing spaces. Second, the values and beliefs of traditionally marginalized people, the Discourse of mainstream society, and how they can inform a third, more transformative space for parental engagement in science are considered. The voices of low-income, marginalized parents around science and parental engagement (i.e., first space) are contrasted with the tenets of major national science policy documents (i.e., second space). Findings indicate a disparity between the pathways of engagement for low-income parents and policymakers who shape science education. Third, methodological questions of responsibility and assumption in qualitative research are explored. The author's complex struggle to make sense of her positionality, responsibilities, and assumptions as a researcher is chronicled. Findings focused on insider/outsider issues and implications for culturally sensitive research are discussed. Finally, the implications for policy, teaching, and research are discussed.

  20. The impact of stakeholder involvement in hospital policy decision-making: a study of the hospital's business processes.

    Science.gov (United States)

    Malfait, Simon; Van Hecke, Ann; Hellings, Johan; De Bodt, Griet; Eeckloo, Kristof

    2017-02-01

    In many health care systems, strategies are currently deployed to engage patients and other stakeholders in decisions affecting hospital services. In this paper, a model for stakeholder involvement is presented and evaluated in three Flemish hospitals. In the model, a stakeholder committee advises the hospital's board of directors on themes of strategic importance. To study the internal hospital's decision processes in order to identify the impact of a stakeholder involvement committee on strategic themes in the hospital decision processes. A retrospective analysis of the decision processes was conducted in three hospitals that implemented a stakeholder committee. The analysis consisted of process and outcome evaluation. Fifteen themes were discussed in the stakeholder committees, whereof 11 resulted in a considerable change. None of these were on a strategic level. The theoretical model was not applied as initially developed, but was altered by each hospital. Consequentially, the decision processes differed between the hospitals. Despite alternation of the model, the stakeholder committee showed a meaningful impact in all hospitals on the operational level. As a result of the differences in decision processes, three factors could be identified as facilitators for success: (1) a close interaction with the board of executives, (2) the inclusion of themes with a more practical and patient-oriented nature, and (3) the elaboration of decisions on lower echelons of the organization. To effectively influence the organization's public accountability, hospitals should involve stakeholders in the decision-making process of the organization. The model of a stakeholder committee was not applied as initially developed and did not affect the strategic decision-making processes in the involved hospitals. Results show only impact at the operational level in the participating hospitals. More research is needed connecting stakeholder involvement with hospital governance.