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
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.
The purpose of research interviews is to obtain information from different respondents in order to answer a research question. The two main types of research interviews are standardized survey interviews and open interviews. The information obtained should meet scientific requirements. These
Evald, Majbritt Rostgaard; Freytag, Per Vagn; Nielsen, Suna Løwe
the transformation that neutral research methods go through, we consider an often-used method in business research, which researchers often become familiar with or have opinions about, which is the personal interview. The illustration of how the personal interview can be influenced by three different paradigms lays...
Peters, Kath; Halcomb, Elizabeth
Interviews are a common method of data collection in nursing research. They are frequently used alone in a qualitative study or combined with other data collection methods in mixed or multi-method research. Semi-structured interviews, where the researcher has some predefined questions or topics but then probes further as the participant responds, can produce powerful data that provide insights into the participants' experiences, perceptions or opinions.
Dempsey, Laura; Dowling, Maura; Larkin, Philip; Murphy, Kathy
In this paper we focus on important considerations when planning and conducting qualitative interviews on sensitive topics. Drawing on experiences of conducting interviews with dementia caregivers, a framework of essential elements in qualitative interviewing was developed to emphasize study participants' needs while also providing guidance for researchers. Starting with a definition of sensitive research, the framework includes preparing for interviews, interacting with gatekeepers of vulnerable groups, planning for interview timing, and location, building relationships and conducting therapeutic interactions, protecting ethically vulnerable participants, and planning for disengagement. This framework has the potential to improve the effectiveness of sensitive interviewing with vulnerable groups. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.
Tom Hudson, M.D., President and Scientific Director of the Ontario Institute for Cancer Research, describes the International Cancer Genome Consortium (ICGC), which brings together cancer genomic data and research from across the world.
Elaine Mardis Ph.D., Professor of Medicine at Washington University School of Medicine, discusses her translational research applying genomics techniques to clinical trials, and forecasts the future of team science and cancer genomics.
Crocker, Joanna C; Boylan, Anne-Marie; Bostock, Jennifer; Locock, Louise
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.
Matthew R. Hunt BSc (PT, PhD
Full Text Available In this paper one aspect of the transition that must be made by experienced clinicians who become involved in conducting qualitative health research is examined, specifically, the differences between clinical and research interviewing. A clinician who is skillful and comfortable carrying out a clinical interview may not initially apprehend the important differences between these categories and contexts of interviewing. This situation can lead to difficulties and diminished quality of data collection because the purpose, techniques and orientation of a qualitative research interview are distinct from those of the clinical interview. Appreciation of these differences between interview contexts and genres, and strategies for addressing challenges associated with these differences, can help clinician researchers to become successful qualitative interviewers.
Parsons, Suzanne; Starling, Bella; Mullan-Jensen, Christine; Tham, Su-Gwan; Warner, Kay; Wever, Kim
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/
Dudley, Louise; Gamble, Carrol; Allam, Alison; Bell, Philip; Buck, Deborah; Goodare, Heather; Hanley, Bec; Preston, Jennifer; Walker, Alison; Williamson, Paula; Young, Bridget
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
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
Conducting interviews is one of the most common ways of collecting data in healthcare research. In particular, interviews are associated with qualitative research, where researchers seek to understand participants' experiences through their own words and perspectives. This article will help healthcare researchers prepare to carry out interviews as part of their research. It will also emphasise important skills to consider during the interview process. Consideration will also be given to remedying interviews that do not go according to plan, as well as identifying appropriate debriefing processes post-interview. With this knowledge, healthcare researchers are more likely to conduct effective interviews that will yield better quality data and protect the participant.
Kathryn Roulston PhD
Full Text Available Recent methodological work that draws on a ‘constructionist’ approach to interviewing - conceptualizes the interview as a socially-situated encounter in which both interviewer and interviewee play active roles. This approach takes the construction of interview data as a topic of examination. This article adopts the view that close examination of how particular interactions are accomplished provides additional insights into not only the topics discussed, but also how research design and methods might be modified to meet the needs of projects. Focus is specifically given to investigation of sequences observed as puzzling or challenging during interviews, or via interview data that emerged as problematic in the analysis process. How might close analyses of these sorts of sequences be used to inform research design and interview methods? The article explores (1 how problematic interactions identified in the analysis of focus group data can lead to modifications in research design, (2 an approach to dealing with reported data in representations of findings, and (3 how data analysis can inform question formulation in successive rounds of data generation. Findings from these types of examinations of interview data generation and analysis are valuable for informing both interview practice as well as research design in further research.
Haahr, Anita; Norlyk, Annelise; Hall, Elisabeth Oc
Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforeseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence, respect for human rights and respect for autonomy through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative research interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological interview studies. We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers' premises to react to unexpected situations and act in a sound ethical manner must be enhanced, and there is a need for an increased focus on the researchers' ethical preparation and to continually address and discuss cases from their own interviews.
Banner, Davina; Grant, Lyle G
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.
Kasper, Gabriele; Prior, Matthew T.
Autobiographic research interviews have become an accepted and valued method of qualitative inquiry in TESOL and applied linguistics more broadly. In recent discussions surrounding the epistemological treatment of autobiographic stories, TESOL researchers have increasingly called for more attention to the ways in which stories are embedded in…
Haahr, Anita; Norlyk, Annelise; Hall, Elisabeth
Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence respect for human rights and respect for autonomy...... through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative researchs interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological...... interview studies. We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers' premises to react to unexpected situations and act in a sound ethical manner must...
Jacob, Stacy A.; Furgerson, S. Paige
Students new to doing qualitative research in the ethnographic and oral traditions, often have difficulty creating successful interview protocols. This article offers practical suggestions for students new to qualitative research for both writing interview protocol that elicit useful data and for conducting the interview. This piece was originally…
Full Text Available The most commonly used method for data collection in qualitative research is interviewing. With technology changes over the last few decades, the online interview has overcome time and financial constraints, geographical dispersion, and physical mobility boundaries, which have adversely affected onsite interviews. Skype as a synchronous online service offers researchers the possibility of conducting individual interviews as well as small focus groups, comparable to onsite types. This commentary presents the characteristics of the Skype interview as an alternative or supplemental choice to investigators who want to change their conventional approach of interviewing.
Janghorban, Roksana; Latifnejad Roudsari, Robab; Taghipour, Ali
The most commonly used method for data collection in qualitative research is interviewing. With technology changes over the last few decades, the online interview has overcome time and financial constraints, geographical dispersion, and physical mobility boundaries, which have adversely affected onsite interviews. Skype as a synchronous online service offers researchers the possibility of conducting individual interviews as well as small focus groups, comparable to onsite types. This commentary presents the characteristics of the Skype interview as an alternative or supplemental choice to investigators who want to change their conventional approach of interviewing.
-anchored interviewing, and second, by an interview guide that explores a research participant's personal experience with mindfulness meditation. An excerpt from an interview is discussed to illustrate the advantages of this interview form, namely its value as a methodological instrument for qualitative research...
Hoskins, Marie L.; White, Jennifer
In this article we describe some of the challenges and constraints that students face when they engage in qualitative research interviews. We borrow extensively from Ron Pelias' in-depth description of "leaning in" during everyday life encounters. Although he refers to other kinds of relationships, we believe that the similarities…
Hershberger, Patricia E; Kavanaugh, Karen
Despite an increasing use of qualitative email interviews by nurse researchers, there is little understanding about the appropriateness and equivalence of email interviews to other qualitative data collection methods, especially on sensitive topics research. The purpose is to describe our procedures for completing asynchronous, email interviews and to evaluate the appropriateness and equivalency of email interviews to phone interviews in two qualitative research studies that examined reproductive decisions. Content analysis guided the methodological appraisal of appropriateness and equivalency of in-depth, asynchronous email interviews to single phone interviews. Appropriateness was determined by: (a) participants' willingness to engage in email or phone interviews, (b) completing data collection in a timely period, and (c) participants' satisfaction with the interview. Equivalency was evaluated by: (a) completeness of the interview data, and (b) insight obtained from the data. Of the combined sample in the two studies (N=71), 31% of participants chose to participate via an email interview over a phone interview. The time needed to complete the email interviews averaged 27 to 28days and the number of investigator probe-participant response interchanges was 4 to 5cycles on average. In contrast, the phone interviews averaged 59 to 61min in duration. Most participants in both the email and phone interviews reported they were satisfied or very satisfied with their ability to express their true feelings throughout the interview. Regarding equivalence, 100% of the email and phone interviews provided insight into decision processes. Although insightful, two of the email and one phone interview had short answers or, at times, underdeveloped responses. Participants' quotes and behaviors cited within four published articles, a novel evaluation of equivalency, revealed that 20% to 37.5% of the citations about decision processes were from email participants, which is
Reid, Steve; Mash, Bob
This article is part of a series on African Primary Care Research and focuses on the topic of qualitative interviewing in primary care. In particular it looks at issues of study design, sample size, sampling and interviewing in relation to individual and focus group interviews.There is a particular focus on helping postgraduate students at a Masters level to write their research proposals.
Kim, M-S; Derivois, D
The interview is an intersubjective meeting in which the stakes are complex. This frequently used method in social and human sciences research brings to the foreground various mental processes. Despite its clear distinction from the therapeutic interview, due to its purpose and the origin of the request, the research interview generates for both the participant and the researcher unconscious phenomena and contributes to the epistemological reflection inherent to the clinical approach. The aim of this article is to demonstrate that the mental processes mobilized in the participants and in the researcher, who belong to the same culture of origin during the research interview, may be analyzed in four dimensions: intrapsychique, intersubjective, projective and group. So as to illustrate the various mental processes that are engaged, a research conducted in clinical intercultural psychology regarding the adaptive processes and the identity strategies of Korean mothers living in France or in Quebec is used. In order to offer maximum freedom of expression to the participants, the interviews were conducted in Korean, and then translated into French. The intrapsychic dimension is illustrated by an example from the interview with a 44-year-old Korean woman met in Paris. Following the Rogerian theory (1952, 1961), we understand that the participant comes to a coherent reorganization of her own conception throughout the interview, allowing her to speak and to think about her autobiography. From the interaction between two subjectivities, the thought and the discourse are involved in the co-construction of meaning. The understanding of the intersubjective dimension is supported by the theory of Winnicott (1971), developed for the transitional space. Like the mother-child relationship in the game device, the mental permeability available to the researcher is supposed to guarantee the development of the interviewee's confidence. The example of the interview conducted with another
Chalhoub-Deville, Micheline; Fulcher, Glenn
Many researchers and practitioners maintain that ACTFL's efforts to improve instructional practices and promote proficiency assessments tied to descriptors of what learners can do in real life have contributed significantly to second language teaching and testing. Similar endeavors in the area of research, however, are critically needed. Focusing…
Face-to-face interviews have long been the dominant interview technique in the field of qualitative research. In the last two decades, telephone interviewing became more and more common. Due to the explosive growth of new communication forms, such as computer mediated communication (for example
Full Text Available Face-to-face interviews have long been the dominant interview technique in the field of qualitative research. In the last two decades, telephone interviewing became more and more common. Due to the explosive growth of new communication forms, such as computer mediated communication (for example e-mail and chat boxes, other interview techniques can be introduced and used within the field of qualitative research. For a study in the domain of virtual teams, I used various communication possibilities to interview informants as well as face-to-face interviews. In this article a comparison will be made concerning the advantages and disadvantages of face-to-face, telephone, e-mail and MSN messenger interviews. By including telephone and MSN messenger interviews in the comparison, the scope of this article is broader than the article of BAMPTON and COWTON (2002. URN: urn:nbn:de:0114-fqs0604118
Sade, Christian; de Barros, Leticia Maria Renault; Melo, Jorge José Maciel; Passos, Eduardo
This paper seeks to assess a way of conducting interviews in line with the ideology of Brazilian Psychiatric Reform. In the methodology of participative intervention and research in mental health, the interview is less a data collection than a data harvesting procedure. It is designed to apply the principles of psychosocial care, autonomy as the basis for treatment, the predominance of the users and of their social networks and civic participation. Inspired by the Explicitation Interview technique, the contention is that the handling of the interview presupposes an open attitude able to promote and embrace different viewpoints. This attitude makes the interview a collective experience of sharing and belonging, allowing participants to reposition themselves subjectively in treatment with the emergence of groupality. As an example of using the interview as a methodological tool in mental health research, we examine research into adaptation of the tool of Autonomous Medication Management (GAM). It is an interventionist approach guided by principles that foster autonomy and the protagonist status of users of psychotropic medication, their quality of life, their rights and recognition of the multiple significances of medication, understood here as a collective interview technique.
Piil, Karin; Jarden, Mary
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...
M. van der Werf (Marloes); S.G. Heumann (Silke); E.M.H. Mitchell
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
Kinser, Amber E.
Addresses how fundamental questions associated with research on gender and employment interviewing might be inherently biased. Contends that gender bias is prevalent in the workplace. Examines employment interviewing and what appears to be inconclusive evidence of gender bias in this context. Suggests guidelines for researchers interested in…
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.
de Paula, Cristiane Cardoso; Padoin, Stela Maris de Mello; Terra, Marlene Gomes; Souza, Ivis Emília de Oliveira; Cabral, Ivone Evangelista
This paper aimed to report the experience of driving modes of an interview on data production in phenomenological research. The proposed study is an experience report of a phenomenological investigation in which the researchers present their experience with children, considering the interview as an existential encounter. It describes ways of conducting the interview in its ontic and ontological dimensions. The ontic dimension refers to the facts related to the interview, presented in the researcher, in the researched subject and in the environment; both in its planning and its development. The ontological dimension is based on empathy and intersubjectivity. The interview enables the access to meaningful structures to comprehend the being, as a way of building investigative/assistance possibilities that enable to reveal the being of the human.
The interview is a widely-used method for collecting research data, notably in qualitative and mixed protocols. However, it is an umbrella term which groups together numerous types of interviews adapted to the methodological diversity which characterises nursing science. Copyright © 2016. Published by Elsevier Masson SAS.
Association du personnel
New column in ECHO The editorial team would like to give the âﾜpeople at CERNâ the chance to have their say. Through regular interviews, it wishes to highlight the particularities of those who help CERN remain a centre of excellence.
Telephone interviews are largely neglected in the qualitative research literature and, when discussed, they are often depicted as a less attractive alternative to face-to-face interviewing. The absence of visual cues via telephone is thought to result in loss of contextual and nonverbal data and to compromise rapport, probing, and interpretation of responses. Yet, telephones may allow respondents to feel relaxed and able to disclose sensitive information, and evidence is lacking that they produce lower quality data. This apparent bias against telephone interviews contrasts with a growing interest in electronic qualitative interviews. Research is needed comparing these modalities, and examining their impact on data quality and their use for studying varying topics and populations. Such studies could contribute evidence-based guidelines for optimizing interview data. 2008 Wiley Periodicals, Inc
In Conversation is a series of interviews and videos of research partners working on climate change adaptation projects in Africa, Asia, and Latin America and the Caribbean, funded through IDRC's Climate Change and Water program.
Mellor, Ruth M; Slaymaker, Emma; Cleland, John
In this article we discuss some methodological and ethical challenges we faced when conducting a couple-based study on men's role in contraceptive switching, and how we overcame them. The challenges we discuss include recruiting couples with a range of experiences, ensuring informed consent of participants, maintaining confidentiality within interviews, and participants discussing interview content between interviews. As appropriate, we have drawn on study participants' views of these challenges. We conclude that although couple research poses challenges, they can be overcome or minimized, and that for certain research questions this methodology is well worth using.
DeLyser, Dydia; Potter, Amy E.
This article describes experiential-learning approaches to conveying the work and rewards involved in qualitative research. Seminar students interviewed one another, transcribed or took notes on those interviews, shared those materials to create a set of empirical materials for coding, developed coding schemes, and coded the materials using those…
Kvale, Steinar; Brinkmann, Svend
Interviewet spiller en afgørende rolle i en stor del kvalitativ forskning. Men det er samtidig en kompleks disciplin, der rummer mange faldgruber og kræver fintfølende analytiske kompetencer. I denne bog giver Steinar Kvale og Svend Brinkmann en introduktion til de teoretiske og praktiske aspekte...... disciplin gennem en præsentation af dets syv stadier, hvor forfatterne klæder læseren fagligt på til at planlægge og foretage interviews....
Meyer, Bente; Levinsen, Karin
Interviews with trainees were conducted after the Action Research period (November-December 2006), when LBs 1-4 were tested on trainees. The aim of the interviews was to understand how teachers learn to teach and to relate to the online environment through the specific context of the Lancelot live...... online course. The focus of the interviews was on the one hand the ability of the course to support this learning process and on the other hand the correction and adjustment of the syllabus for the spring pilot testing phase (beginning March 2007)....
Guillemin, M.; Harris, A.
In the social sciences, there has been an increasing level of interest in the five senses, especially in disciplines such as anthropology, sociology, architecture and human geography. In this case study, we focus on using the senses in qualitative research interviews. We discuss a research method
Adams, Catherine A.; Thompson, Terrie Lynn
This article argues the importance of including significant technologies-in-use as key qualitative research participants when studying today's digitally enhanced learning environments. We gather a set of eight heuristics to assist qualitative researchers in "interviewing" technologies-in-use (or other relevant objects), drawing on concrete…
Muylaert, Camila Junqueira; Sarubbi, Vicente; Gallo, Paulo Rogério; Neto, Modesto Leite Rolim
Objetives This methodological study explain and emphasize the extent and fertility of the narrative interview in qualitative research. Methods To describe the narrative method within the qualitative research. Results The qualitative research method is characterized by addressing issues related to the singularities of the field and individuals investigated, being the narrative interviews a powerful method for use by researchers who aggregate it. They allow the deepening of research, the combination of life stories with socio-historical contexts, making the understanding of the senses that produce changes in the beliefs and values that motivate and justify the actions of possible informants. Conclusion The use of narrative is an advantageous investigative resource in qualitative research, in which the narrative is a traditional form of communication whose purpose is to serve content from which the subjective experiences can be transmitted.
In addition to teaching research and writing skills, First-Year Composition classes are well situated to help students develop strategies for managing stress and increasing well-being. I describe an assignment sequence in which students interview others from three generations about topics related to happiness and wellbeing, analyze shared…
Bedoin, D.; Scelles, R.
This study focuses on the qualitative research interview, an essential tool frequently used in the human and social sciences, conducted with children having communication disorders. Two distinct populations are addressed--children with intellectual disability and deaf children without related disabilities--with the aim of identifying the main…
Connelly, Lynne M; Peltzer, Jill N
In this methodological article, the authors address the problem of underdeveloped themes in qualitative studies they have reviewed. Various possible reasons for underdeveloped themes are examined, and suggestions offered. Each problem area is explored, and literature support is provided. The suggestions that are offered are supported by the literature as well. The problem with underdeveloped themes in certain articles is related to 3 interconnected issues: (a) lack of clear relationship to the underlying research method, (b) an apparent lack of depth in interviewing techniques, and (c) lack of depth in the analysis. Underdeveloped themes in a qualitative study can lead to a lack of substantive findings that have meaningful implications for practice, research, and the nursing profession, as well as the rejection of articles for publication. Fully developed themes require knowledge about the paradigm of qualitative research, the methodology that is proposed, the effective techniques of interviewing that can produce rich data with examples and experiences, and analysis that goes beyond superficial reporting of what the participants have said. Analytic problem areas include premature closure, anxiety about how to analyze, and confusion about categories and themes. Effective qualitative research takes time and effort and is not as easy as is sometimes presumed. The usefulness of findings depends on researchers improving their research skills and practices. Increasingly researchers are using qualitative research to explore clinically important issues. As consumers of research or members of a research team, clinical nurse specialists need to understand the nature of this research that can provide in-depth insight and meaning.
A qualitative clinical study of preliminary interviews by the Working Party on Initiating Psychoanalysis (WPIP) of the European Psychoanalytic Federation suggests that the unconscious dynamics in first interviews are extraordinarily powerful and that they give rise to deep unconscious anxieties in both patient and analyst, with the corresponding defences against them. Furthermore, the group dynamics observed in the clinical workshops and in the research team doing the study suggest that both the anxieties and the defences are conveyed to these groups in the form of unelaborated 'session residues' provoking renewed anxieties and defences in them. These findings contribute to our understanding of what goes on in first interviews, but also raise interesting questions about the psychoanalytic research process in psychoanalysis and how confrontation with the unknown is dealt with in that context. Rather than as a means to avoid anxiety, method in clinical research can be seen as a way to help the research group to contain its reactions and to tolerate them until the group finds its way to further elaboration. These points are illustrated with a clinical case drawn from the study. Copyright © 2014 Institute of Psychoanalysis.
Cloyes, Kristin Gates
Nursing literature is replete with discussions about the ethics of research interviews. These largely involve questions of method, and how careful study design and data collection technique can render studies more ethical. Analysis, the perennial black box of the research process, is rarely discussed as an ethical practice. In this paper, I introduce the idea that analysis itself is an ethical practice. Specifically, I argue that political discourse analysis of research interviews is an ethical practice. I use examples from my own research in a prison control unit to illustrate what this might look like, and what is at stake.
Baxter, Susan; Clowes, Mark; Muir, Delia; Baird, Wendy; Broadway-Parkinson, Andrea; Bennett, Carole
Members of the public are increasingly being invited to become members of a variety of different panels and boards. This study aimed to systematically search the literature to identify studies relating to support or training provided to members of the public who are asked to be members of an interview panel. A systematic search for published and unpublished studies was carried out from June to September 2015. The search methods included electronic database searching, reference list screening, citation searching and scrutinizing online sources. We included studies of any design including published and unpublished documents which outlined preparation or guidance relating to public participants who were members of interview panels or representatives on other types of panels or committees. Results were synthesised via narrative methods. Thirty-six documents were included in the review. Scrutiny of this literature highlighted ten areas which require consideration when including members of the public on interview panels: financial resources; clarity of role; role in the interview process; role in evaluation; training; orientation/induction; information needs; terminology; support; and other public representative needs such as timing, accessibility and support with information technology. The results of the review emphasize a range of elements that need to be fully considered when planning the involvement of public participants on interview panels. It highlights potential issues relating to the degree of involvement of public representatives in evaluating/grading decisions and the need for preparation and on-going support. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Full Text Available Dr. Joseph Goetz is an internationally known researcher working in academia to blend financial planning, financial counseling, and therapy approaches into tools and techniques that enhance the well-being of individuals and families. Dr. Goetz’s work in developing the ASPIRE clinic at the University of Georgia has helped place Georgia at the forefront of financial therapy research. In this interview readers of the Journal can learn more about the exciting work Dr. Goetz is doing to advance the Financial Therapy profession.
Neupane, Dinesh; van Teijlingen, E; Khanal, V
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....
This article presents a conception of the qualitative research interview as discourses crossing swords. The article draws on examples showing how the researchers' view on learning is challenged by the interviewed apprentices. The apprentices do not assume learning in itself to be an important aspect of their lives. They consider the process of…
Patall, Erika A.; Cooper, Harris; Robinson, Jorgianne Civey
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)…
Anderson, Claire; Kirkpatrick, Susan
Introduction Narrative interviews place the people being interviewed at the heart of a research study. They are a means of collecting people's own stories about their experiences of health and illness. Narrative interviews can help researchers to better understand people's experiences and behaviours. Narratives may come closer to representing the context and integrity of people's lives than more quantitative means of research. Methodology Researchers using narrative interview techniques do not set out with a fixed agenda, rather they tend to let the interviewee control the direction, content and pace of the interview. The paper describes the interview process and the suggested approach to analysis of narrative interviews, We draw on the example from a study that used series of narrative interviews about people's experiences of taking antidepressants. Limitations Some people may find it particularly challenging to tell their story to a researcher in this way rather than be asked a series of questions like in a television or radio interview. Narrative research like all qualitative research does not set out to be generalisable and may only involve a small set of interviews.
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
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.
Amelia Courtney Hritz
Full Text Available Children's testimony is often the only evidence of alleged abuse. Thus, the importance of conducting forensic interviews that are free from bias and misleading information is immense, as these could lead to false reports. In the current paper, we review unexpected findings in children's suggestibility that illustrate the difficulty in distinguishing between false and accurate reports. We explore situations in which a younger person's memory account may be more accurate than that of an adult, when a single suggestive interview may be as detrimental as multiple interviews, and when children can make inaccurate reports spontaneously. We conclude with recommendations for interviewers to decrease false reporting by both children and adults.
Full Text Available Abstract Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. Methods A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. Results The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. Conclusion The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.
Gysels, Marjolein; Shipman, Cathy; Higginson, Irene J
Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview.
Gysels, Marjolein; Shipman, Cathy; Higginson, Irene J
Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. Methods A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. Results The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. Conclusion The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. PMID:18435846
Wood, Marjorie L.
Focus group interviews, described as a qualitative research method with good potential in family medicine, are traced from their origins in market research to their growing role in sociology and medicine. Features of this method are described, including design, conduct, and analysis. Both proven and potential areas for primary care research using focus groups are outlined.
Catherine Martel speaks to Francesca Lake, Managing Commissioning Editor: Catherine Martel obtained her PhD from the Université de Montréal and pursued a postdoctoral fellowship first at Mount Sinai School of Medicine in New York (NY, USA), then at Washington University School of Medicine in St Louis (MO, USA), and obtained the Junior Investigator Award for Women from the Arteriosclerosis, Thrombosis and Vascular Biology council of the American Heart Association. Her postdoctoral work is certainly groundbreaking and brings forward new considerations in the field: she discovered that the lymphatic vessel route, the network that runs in parallel with the blood vessels, is critical for removing cholesterol from multiple tissues, including the aortic wall. In 2013, she joined the Arteriosclerosis, Thrombosis and Vascular Biology Early Career Committee, eager to bring a Canadian perspective to the group and get involved in council activities. Since 2014, she is an Assistant Professor at the Department of Medicine at the Université de Montréal, and a research scientist at the Montreal Heart Institute. Her research program now focuses on characterizing the physiopathologic role of the lymphatics in the initiation, progression and regression of atherosclerosis. Basic and translational research will allow her team to identify the causes of lymphatic dysfunction, and eventually target potential therapeutic strategies aiming at improving lymphatic function at the different levels of the atherothrombotic disease. You can follow her laboratory at @LaboMartel_ICM.
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 ...
Uhrenfeldt, Lisbeth; Paterson, Barbara; Hall, Elisabeth
Abstract: Little has been written about how to teach novice researchers about qualitative research interviewing. In this article, the authors recognize qualitative research interviewing as a practice that one develops through reflexivity. They propose that novices can develop a reflexive...... to enhance the development of novice researchers as qualitative research interviewers....... interviewing practice by using a guided framework to review video records of the interviews they conduct. The authors discuss the framework and illustrate its use with an exemplar derived from the experience of a novice researcher. They conclude with a discussion of the need for further research about how best...
A growing number of studies have examined qualitative research interviews in terms of how researchers' own identities and agendas are implicated in the construction of interviewees' responses. Adopting the constructionist conception of research interviews, the current study introduces a comparative analysis of 2 interviews with a multilingual…
Elliott, Iain S; Sonshine, Daniel B; Akhavan, Sina; Slade Shantz, Angelique; Caldwell, Amber; Slade Shantz, Jesse; Gosselin, Richard A; Coughlin, R Richard
Research addressing the burden of musculoskeletal disease in low- and middle-income countries does not reflect the magnitude of the epidemic in these countries as only 9% of the world's biomedical resources are devoted to addressing problems that affect the health of 90% of the world's population. Little is known regarding the barriers to and drivers of orthopaedic surgery research in such resource-poor settings, the knowledge of which would help direct specific interventions for increasing research capacity and help surgeons from high-income countries support the efforts of our colleagues in low- and middle-income countries. We sought to identify through surveying academic orthopaedic surgeons in East Africa: (1) barriers impeding research, (2) factors that support or drive research, and (3) factors that were identified by some surgeons as barriers and others as drivers (what we term barrier-driver overlap) as they considered the production of clinical research in resource-poor environments. Semistructured interviews were conducted with 21 orthopaedic surgeon faculty members at four academic medical centers in Ethiopia, Kenya, Tanzania, and Uganda. Qualitative content analysis of the interviews was conducted using methods based in grounded theory. Grounded theory begins with qualitative data, such as interview transcripts, and analyzes the data for repeated ideas or concepts which then are coded and grouped into categories which allow for identification of subjects or problems that may not have been apparent previously to the interviewer. We identified and quantified 19 barriers to and 21 drivers of orthopaedic surgery research (mentioned n = 1688 and n = 1729, respectively). Resource, research process, and institutional domains were identified to categorize the barriers (n = 7, n = 5, n = 7, respectively) and drivers (n = 7, n = 8, n = 6, respectively). Resource barriers (46%) were discussed more often by interview subjects compared with the
Witty, Karl; Branney, Peter; Bullen, Kate; White, Alan; Evans, Julie; Eardley, Ian
To explore the challenges of engaging men with penile cancer in qualitative interview research. Qualitative interviewing offers an ideal tool for exploring men's experiences of illness, complementing and providing context to gendered health inequalities identified in epidemiological research on men. But conducting interviews with men can be challenging and embarking on a qualitative interview study with males can feel like a daunting task, given the limited amount of practical, gender-sensitive guidance for researchers. Reflecting on a researcher's experience of conducting qualitative research on men with penile cancer, this paper explores the potential challenges of interviewing this group, but also documents how engagement and data collection were achieved. This is a reflective paper, informed by the experiences of a male researcher (KW) with no nurse training, who conducted 28 interviews with men who had been treated for penile cancer. The researcher's experiences are reported in chronological order, from the methodological challenges of recruitment to those of conducting the interview. The paper offers a resource for the novice researcher, highlighting some advantages and disadvantages of conducting qualitative interview research as a nurse researcher, as well as recommendations on how to overcome challenges. Engaging men with penile cancer in qualitative interview raises practical, methodological, ethical and emotional challenges for the researcher. However, when these challenges are met, men will talk about their health. Methodological procedures must enable an open and ongoing dialogue with clinical gatekeepers and potential participants to promote engagement. Support from colleagues is essential for any interviewer, no matter how experienced the researcher is.
Shipman Cathy; Gysels Marjolein; Higginson Irene J
Abstract Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a...
Mortari, Luigina; Saiani, Luisa
Reflections on qualitative research. Interview of Luisa Saiani to Luigina Mortari. Luigina Mortari, an internationally known expert of epistemology and qualitative research, was interviewed to explore her thoughts on issues relevant for qualitative research: when a research question can be considered relevant; key methodological elements; ethical issues.
Ethnographic interviewing is an under-utilized tool in climate change evaluation research, even though it has the potential to serve as a powerful method of data collection. The utility of the ethnographic interview lies in its ability to elicit responses from program participants describing what a program is in practice, shedding light on both intended and unintended program impacts. Drawing on evaluation work involving a federally-funded climate change grant at the University of California, Riverside, I will discuss how to design an ethnographic interview protocol in an effort to share "best practices" with other climate change evaluators. Particular attention will be given to applying ethnographic approaches to various program types, even those differing from the one discussed. I will share some of the concrete findings from my work on this grant, to serve as examples of the kinds of data evaluators can collect when employing an ethnographic approach to interviewing. UC Riverside's climate change grant is multi-faceted, however the component studied ethnographically was a science fair mentoring program. About twenty K-12 students from high poverty, ethnically diverse schools who expressed an interest in participating in science fair were paired up with graduate student mentors to simultaneously research climate change and design authentic science fair projects to compete at various levels. Since one of the stated goals of the grant is to "stimulate…students to consider climate science as a career track through experiential education activities" I was particularly interested in how student experiences with the project might differ from school science which has historically "pushed out" ethnically diverse students like those in many of Riverside's schools. (In the program students are able to interact one-on-one with a mentor and in school settings there is typically one teacher for more than thirty students). I also sought to understand student perceptions of
Antes, Alison L; Mart, Adelina; DuBois, James M
Principal investigators are responsible for a myriad of leadership and management activities in their work. The practices they use to navigate these responsibilities ultimately influence the quality and integrity of research. However, leadership and management roles in research have received scant empirical examination. Semi-structured interviews with 32 National Institutes of Health (NIH)-funded genetic researchers revealed that they considered leadership and management essential for effective research, but their scientific training inadequately prepared them. We also report management practices that the researchers described using in their labs, as well as their perceptions of a proposed intervention to enhance laboratory leadership. These findings suggest best practices for the research community, future directions for scientific training, and implications for research on leadership and management in science.
Antes, Alison L.; Mart, Adelina; DuBois, James M.
Principal investigators are responsible for a myriad of leadership and management activities in their work. The practices they employ to navigate these responsibilities ultimately influence the quality and integrity of research. However, leadership and management roles in research have received scant empirical examination. Semi-structured interviews with 32 National Institutes of Health (NIH)-funded genetic researchers revealed that they considered leadership and management essential for effective research, but their scientific training inadequately prepared them. We also report management practices that the researchers described employing in their labs, as well as their perceptions of a proposed intervention to enhance laboratory leadership. These findings suggest best practices for the research community, future directions for scientific training, and implications for research on leadership and management in science. PMID:27646401
Mears, Carolyn Lunsford
This volume introduces a fresh approach to research, using strategies adapted from oral history and educational criticism to traverse the boundaries of human experience, and bring to light matters of concern to education and social science researchers. This narrator-centered method, a by-product of the author's award-winning investigation into the…
Lieshout, H. van
Aim: To share the experience of working with people with intellectual disabilities (ID) as interviewers in a qualitative study about community participation of people with ID. We reflect on two perspectives: the interviewers and the researchers. Method: Eighteen people with ID were interviewed by
Goodell, L Suzanne; Stage, Virginia C; Cooke, Natalie K
The increased emphasis on incorporating qualitative methodologies into nutrition education development and evaluation underscores the importance of using rigorous protocols to enhance the trustworthiness of the findings. A 5-phase protocol for training qualitative research assistants (data collectors and coders) was developed as an approach to increase the consistency of the data produced. This training provides exposure to the core principles of qualitative research and then asks the research assistant to apply those principles through practice in a setting structured on critical reflection. Copyright © 2016 Society for Nutrition Education and Behavior. Published by Elsevier Inc. All rights reserved.
Full Text Available Dr. Axton Betz-Hamilton teaches consumer studies courses at Eastern Illinois University, including Personal and Family Finance, Housing, and Consumer Issues. She conducts research on identity theft as well as financial abuse within families.
Patient-reported outcome (PRO) measures must provide evidence that their development followed a rigorous process for ensuring their content validity. To this end, the collection of data is performed through qualitative interviews that allow for the elicitation of in-depth spontaneous reports of the patients’ experiences with their condition and/or its treatment. This paper provides a review of qualitative research applied to PRO measure development. A clear definition of what is a qualitative research interview is given as well as information about the form and content of qualitative interviews required for developing PRO measures. Particular attention is paid to the description of interviewing approaches (e.g., semi-structured and in-depth interviews, individual vs. focus group interviews). Information about how to get prepared for a qualitative interview is provided with the description of how to develop discussion guides for exploratory or cognitive interviews. Interviewing patients to obtain knowledge regarding their illness experience requires interpersonal and communication skills to facilitate patients’ expression. Those skills are described in details, as well as the skills needed to facilitate focus groups and to interview children, adolescents and the elderly. Special attention is also given to quality assurance and interview training. The paper ends on ethical considerations since interviewing for the development of PROs is performed in a context of illness and vulnerability. Therefore, it is all the more important that, in addition to soliciting informed consent, respectful interactions be ensured throughout the interview process. PMID:24499454
Rebecca J. Travnichek
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Dr. Rebecca Travnichek is a Family Financial Education Specialist with University of Missouri Extension. Dr. Travnichek currently serves as the Annual Conference Program Chair. She is also very active in the Association for Financial Counseling and Planning Education, where she serves on the Board of Directors. Dr. Travnichek has participated in leadership development programs at the state and national levels. She was involved in the initial proposal development of the Financial Security for All Community of Practice with eXtension and continues to be involved through several roles. She is active in the National Extension Association of Family and Consumer Sciences at the national and state levels, serving in multiple leadership roles. For the past three years, Dr. Travnichek has also served as the Editor of the Journal of the National Extension Association of Family and Consumer Sciences. She represents the type of person who makes the Financial Therapy Association a dynamic organization linking practitioners and academicians.
From safety to nutrition, food policy researchers work to improve what we eat. They examine evidence found by experts in food science, consumer behavior, taste perception, nutrition, and many other related fields. Using this information, these scientists help the food industry, government, and public improve the quality, safety, and sustainability…
Organizational behavior, as a theory-developing field of research, is highly questionnaire-based and highly dependent on quantitative methods. In its dominant methodology tradition, variables are measured in a sample of respondents or other units of observation and the calculated relationships
Full Text Available This paper addresses several issues related to validity in qualitative research and, more specifically, explores the ways in which validity has been discussed and applied in research with qualitative interviews. The central question is to what extent, if at all, traditional positivist validity criteria are applicable, but also relevant, for evaluation of research with qualitative interviewing. The qualitative interview has been chosen as the focal point of this paper because of its peculiarity in terms of the relationship between the interviewer and the interviewee or, in other words, the ways in which during an interview meaning and narrative are constructed through discourse between the participants. The importance of the relationship (with its characteristics between research participants (interviewer and interviewee for the outcome of a qualitative interview cannot be overemphasized and is as such of particular interest for the assessment of its validity. I introduce and summarize the main approaches to the study and establishment of validity and scrutinize their significance for the example of qualitative interviewing and research in particular. This paper shows the importance of considering research context (in this instance interview for any assessment of validity, if validity at all ought to assume the same role in qualitative and quantitative research. As alternatives to the positivist notion of validity concepts such as reflexivity, transparency and credibility throughout the research process are introduced and advocated.
Full Text Available Jodi Letkiewicz, Ph.D., is an assistant professor of finance at York University in Toronto, Ontario. She teaches in the Certified Financial Planner® Core Curriculum program preparing undergraduate students for the Canadian CFP® certification and conducts research in several areas of personal finance and consumer decision-making, including behavioral aspects influencing the decision to seek financial help, how personality traits affect financial decision-making, and the financial state of young adults, including the impact student loans have on overall well-being and financial milestones early in their adult life. Dr. Letkiewicz’s goal is to increase financial well-being in the general public, which she hopes to accomplish through teaching, research, and community outreach.
Sarah Asebedo, Ph.D., CFP®, is an Assistant Professor of Personal Financial Planning with Texas Tech University. With extensive financial planning practitioner experience, her goal is to connect research and financial planning practice with a focus on the relationship between psychological attributes, financial conflicts, and financial behavior. Her work has been published in the Journal of Financial Planning, Journal of Financial Therapy, Journal of Financial Counselin...
In a study exploring the practice knowledge of nursing on adolescent mental health units, I chose hermeneutic philosophy to guide the conduct of the research. Immediately, I encountered the problem that hermeneutics is essentially unconcerned with its use as research method. The need for congruence between the study's hermeneutic foundations and the methodological processes of the research, led me to develop a style of hermeneutic interviewing for the purpose of information gathering. I did this using Gadamer's (1979) fundamental principles of: (1) tradition, (2) dialectics of interpretation, and (3) dialectic of question and answer. These principles are examined and discussed. The actualization of hermeneutic interviewing, as a means of information gathering, proved challenging. Using interview excerpts, I demonstrate my use of hermeneutic interviewing as research method, and critique my interviewing skills in relation to the fundamental principles from which this style of interviewing was developed.
Paloma Gonzalez Bellido is a Lecturer in the Department of Physiology, Development and Neuroscience at the University of Cambridge, where she investigates insect vision. She received her Bachelor's degree in Marine Biology from the University of Queensland, Australia, before moving to the University of Sheffield for her PhD with Mikko Juusola, which she completed in 2009. Paloma has been awarded a Cozzarelli Prize and her research has been recognised by the Society for Neuroethology and the Society for Experimental Biology. © 2017. Published by The Company of Biologists Ltd.
Full Text Available Sarah Asebedo, Ph.D., CFP®, is an Assistant Professor of Personal Financial Planning with Texas Tech University. With extensive financial planning practitioner experience, her goal is to connect research and financial planning practice with a focus on the relationship between psychological attributes, financial conflicts, and financial behavior. Her work has been published in the Journal of Financial Planning, Journal of Financial Therapy, Journal of Financial Counseling and Planning, and Financial Planning Review. Asebedo currently serves as President-Elect for the Financial Therapy Association. She earned her Ph.D. in Personal Financial Planning from Kansas State University.
Kakani Katija is a Principal Engineer at the Monterey Bay Aquarium Research Institute, USA, where she designs and builds instrumentation to study marine invertebrate ecomechanics. She received her Bachelor's degree in Aeronautics and Astronautics from the University of Washington, USA, before moving to the California Institute of Technology, USA, for her Master's degree in Aeronautics with Morteza Gharib and PhD in Bioengineering in the laboratory of John Dabiri, completed in 2010. Katija was recognised as a National Geographic Emerging Explorer in 2011 and has given presentations at TEDYouth and TEDWomen. © 2017. Published by The Company of Biologists Ltd.
Karen Aboody has first-hand experience of taking a potential therapy from the laboratory into clinical trials. Here, she shares with us the challenges and rewards of going from bench to bedside, and why all biomedical researchers need to know what it takes to make the transition if they want the best chance of seeing their discoveries used to help patients. Karen Aboody received her MD at Mount Sinai School of Medicine, and completed her post-doctoral training in Molecular Neurogenetics at Massachusetts General Hospital, Harvard Medical School. After gaining experience in pathology, gene therapy and biotechnology, she joined City of Hope (COH) in 2003 to head a translational research laboratory focused on therapeutic stem cell applications for invasive and metastatic solid tumors. In 2010, she received US FDA approval for a first-in-human clinical trial for neural stem cell-mediated therapy for high-grade glioma patients. This Phase I study is ongoing at COH, supported by NCI/NIH funding. In 2010, she received an US$18 million California Institute of Regenerative Medicine Disease Team Award to develop a second-generation enzyme/prodrug stem cell-mediated brain tumor therapy for clinical trials that may also have applications for other metastatic cancers. Honors include the 2000 AANS Young Investigator Award, and 2008 ASGCT Outstanding New Investigator Award. She recently founded a clinical-stage biopharmaceutical company, TheraBiologics Inc., to support clinical development of neural stem cell-mediated cancer therapies.
Butterfield, Lee D.; Borgen, William A.; Amundson, Norman E.
The purpose of this research was to explore whether qualitative research interviews impacted participants' views of their situations. Forty-five workers who reported handling well changes that affected their work were interviewed to explore their experiences of change, factors that helped and hindered their ability to handle change, and assess the…
Wyatt, Katrina; Carter, Mary; Mahtani, Vinita; Barnard, Angela; Hawton, Annie; Britten, Nicky
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.
Henshaw, Marie; Spivak, Benjamin; Thomas, Stuart D M
Several jurisdictions mandate the presence of an independent support person during police interviews with vulnerable people. The current study investigated police officers' experiences and perceptions of these volunteers during interviews with people with intellectual disability(ies) (ID). The sample comprised 229 police officers who attended a mandatory firearms training course in Melbourne, Australia, in 2010. Participants commonly reported utilizing independent support persons and displayed a fair understanding of their role. Overall, volunteers were engaged more frequently than family/friends; police considered the volunteers to be more impartial during interviews, whereas family/friends provided a greater level of emotional support to interviewees. Independent support persons need to demonstrate two quite different types of support to people with intellectual disability(ies) during police interviews; these require quite different skill sets and suggest the need for more tailored training and support for these volunteers. Implications for future research and policy are discussed. © 2016 John Wiley & Sons Ltd.
Redman-MacLaren, Michelle L; Api, Unia K; Darius, Matupit; Tommbe, Rachael; Mafile'o, Tracie A; MacLaren, David J
The social and cultural positions of both researchers and research participants influence qualitative methods and study findings. In Papua New Guinea (PNG), as in other contexts, gender is a key organising characteristic and needs to be central to the design and conduct of research. The colonial history between researcher and participant is also critical to understanding potential power differences. This is particularly relevant to public health research, much of which has emerged from a positivist paradigm. This paper describes our critical reflection of flexible researcher responses enacted during qualitative research in PNG. Led by a senior male HIV researcher from PNG, a male from a PNG university and a female from an Australian university conducted qualitative interviews about faith-based responses to HIV in PNG. The two researchers planned to conduct one-on-one interviews matching gender of participants and interviewer. However, while conducting the study, four participants explicitly requested to be interviewed by both researchers. This experience led us to critically consider socially and culturally situated ways of understanding semi-structured interviewing for public health research in Melanesia. New understandings about public health research include: (i) a challenge to the convention that the researcher holds more power than the research participant, (ii) the importance of audience in Melanesia, (iii) cultural safety can be provided when two people co-interview and (iv) the effect an esteemed leader heading the research may have on people's willingness to participate. Researchers who occupy insider-outsider roles in PNG may provide participants new possibilities to communicate key ideas. Our recent experience has taught us public health research methods that are gender sensitive and culturally situated are pivotal to successful research in Melanesia. Qualitative research requires adaptability and reflexivity. Public health research methods must continue
Juliana Dias Reis Pessalacia
Full Text Available Objective. To recognize the themes and situations that could make research participants feel embarrassed when questionnaires or interviews are used. Methodology. Quantitative and descriptive study, developed in 2008, involving a stratified sample of 1,1149 subjects who qualified the degree of shame in view of potentially embarrassing themes and situations. Results. For the research participants, it is embarrassing to answer questions related to the following themes: betrayal (50%, physical violence (42%, sexual harassment (42%, psychological violence (40% and death of loved ones (38%. The situations that most frequently causes embarrassment were: start of the survey or interview without requesting informed consent (83%; lack of information about the type of questions that would be addressed (79%, lack of guaranteed anonymity (78%, or use of images (66% or a recorder (58%. Conclusion. Themes and situations were identified that caused embarrassment among participants in research in which questionnaires or interviews were used, which should be considered in the ethical evaluation of studies.
Beaunae, Cathrine; Wu, Chiu-Hui; Koro-Ljungberg, Mirka
This play describes how the authors become aware of the complexities of resistance and performativity in the qualitative interview process. It also illustrates how this awareness and subsequent acquisition of knowledge changed and informed the way they viewed qualitative research interviewing. More specifically, performativity is put into work in…
Bassett, Raewyn; Beagan, Brenda L.; Ristovski-Slijepcevic, Svetlana; Chapman, Gwen E.
Encouraging a teenager to have a conversation in a semistructured research interview is fraught with difficulties. The authors discuss the methodological challenges encountered when interviewing adolescents of European Canadian, African Canadian, and Punjabi Canadian families who took part in the Family Food Decision-Making Study in two regions of…
Lechuga, Vicente M.
Qualitative studies that utilize telephone interviews, as a primary data collection mode, often are not discussed in the qualitative research literature. Data excerpts from a study that sought to understand the culture of for-profit universities are used to illustrate the types of data that can be garnered through telephone interviews. In…
Eklöf, Niina; Hupli, Maija; Leino-Kilpi, Helena
The aim of this article was to discuss factors related to the researcher, interpreter and asylum seekers when planning focus group interviews with asylum seekers. Focus group interview is one of the basic data collection methods in descriptive nursing and health research. It has been used in multicultural research, allowing an opportunity to participate without literacy and to have linguistic and cultural support from other participants. Asylum seekers form a specific, vulnerable group, and the growing number of asylum seekers increases the need for research related to them. A culturally, methodologically and ethically high-quality focus group interview is based on the researcher's special knowledge and skills, acknowledgement of asylum seekers as both individuals and part of cultural and communal groups, and careful planning of the interpreter's role during the interviews. © 2017 John Wiley & Sons Ltd.
Basch, C E
The purpose of this article is to increase awareness about and stimulate interest in using focus group interviews, a qualitative research technique, to advance the state-of-the-art of education and learning about health. After a brief discussion of small group process in health education, features of focus group interviews are presented, and a theoretical framework for planning a focus group study is summarized. Then, literature describing traditional and health-related applications of focus group interviews is reviewed and a synthesis of methodological limitations and advantages of this technique is presented. Implications are discussed regarding: need for more inductive qualitative research in health education; utility of focus group interviews for research and for formative and summative evaluation of health education programs; applicability of marketing research to understanding and influencing consumer behavior, despite notable distinctions between educational initiatives and marketing; and need for professional preparation faculty to consider increasing emphasis on qualitative research methods.
Mathieu, David; Brites, Maria José
This chapter discusses the interview method in relation to context, a central notion in audience studies. Through a critique of the traditional conception of the interview method as a question-answer model, the chapter suggests two different articulations of the interview method in the framework...... of a contextual inquiry: the performative and participatory models of interview. These models are presented in their original theoretical, methodological and empirical contexts and then highlighted along four methodological considerations that help position audience research towards the challenges of a contextual...
Fendrich, M; Mackesy-Amiti, M E; Goldstein, P; Spunt, B; Brownstein, H
We evaluated substance involvement among incarcerated juvenile offenders convicted of murder of manslaughter. Patterns of substance involvement among juvenile offenders were compared with patterns found in older offenders. Irrespective of age group, close to one-third of all homicide perpetrators reported that they were affected by alcohol prior to the offense. In every age group, alcohol was the substance showing the highest rate of "regular" lifetime use and the highest rate of ingestion in the week preceding the homicide. In many respects, the reported substance use patterns in the 16-17-year-old age group were closer to the patterns demonstrated by the oldest (36+) age group than they were to the adjacent 18-20-year-old group. Juvenile offenders were generally less substance involved than all but the oldest group of offenders. Almost all of the juveniles who were substance involved prior to the homicide attributed the homicide to the effects of those substances. Narrative accounts suggest that substances (almost always alcohol) escalated impulsive, spontaneous violent outbursts. Implications for the interpretation of self-reports about substance use provided by murderers are also discussed.
Weinmann, Tobias; Thomas, Silke; Brilmayer, Susanne; Heinrich, Sabine; Radon, Katja
Despite its popularity, Skype has not been tested as a tool for epidemiologic research. We examined its feasibility in Germany. A population-based sample of young adults was randomly invited to a Skype (n = 150) or a phone interview (n = 150). Response and duration of interviews were analysed to evaluate the feasibility of Skype interviews. Response was low and, with 10 % (95 % CI 5-15 %), even worse among Skype candidates, compared to 22 % (15-28 %) in the phone group. A third of the Skype group asked for being interviewed by phone. Median duration was 34.0 minutes for Skype interviews and 37.0 minutes for phone interviews. Skype is not yet a feasible tool for data collection in Germany.
Garfield, S; Jheeta, S; Husson, F; Jacklin, A; Bischler, A; Norton, C; Franklin, B D
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
McLaughlin, Katrina; Muldoon, Orla
Work and family roles have changed considerably in the past number of decades. Fathers are now expected to fulfil the role of 'new father' that involves actively caring and sharing in child rearing and, at the same time, maintain commitment to their occupational role. As a consequence, men are subject to the same pressure that women were when they initially entered the workplace decades ago and indeed still are today. This study aims to explore the meanings fathers attach to their life roles,...
Clausen, Aksel Skovgaard
relatively “strong” interviewees (interview persons: IPs) with diverse backgrounds; (2) thorough planning of the interview with well-focused themes; and (3) a thorough and repeated introduction to the interview. The omission of audio transcriptions is an obvious solution to the researcher who wants a breadth...... of range of statements stemming from the use of many more interviewees than is often possible. The Individually Focused Interview (TIFI) also provides more time for involvement in the field and further analysis....
Henry, Stephen G; Fetters, Michael D
We describe the concept and method of video elicitation interviews and provide practical guidance for primary care researchers who want to use this qualitative method to investigate physician-patient interactions. During video elicitation interviews, researchers interview patients or physicians about a recent clinical interaction using a video recording of that interaction as an elicitation tool. Video elicitation is useful because it allows researchers to integrate data about the content of physician-patient interactions gained from video recordings with data about participants' associated thoughts, beliefs, and emotions gained from elicitation interviews. This method also facilitates investigation of specific events or moments during interactions. Video elicitation interviews are logistically demanding and time consuming, and they should be reserved for research questions that cannot be fully addressed using either standard interviews or video recordings in isolation. As many components of primary care fall into this category, high-quality video elicitation interviews can be an important method for understanding and improving physician-patient interactions in primary care.
Henry, Stephen G.; Fetters, Michael D.
We describe the concept and method of video elicitation interviews and provide practical guidance for primary care researchers who want to use this qualitative method to investigate physician-patient interactions. During video elicitation interviews, researchers interview patients or physicians about a recent clinical interaction using a video recording of that interaction as an elicitation tool. Video elicitation is useful because it allows researchers to integrate data about the content of physician-patient interactions gained from video recordings with data about participants’ associated thoughts, beliefs, and emotions gained from elicitation interviews. This method also facilitates investigation of specific events or moments during interactions. Video elicitation interviews are logistically demanding and time consuming, and they should be reserved for research questions that cannot be fully addressed using either standard interviews or video recordings in isolation. As many components of primary care fall into this category, high-quality video elicitation interviews can be an important method for understanding and improving physician-patient interactions in primary care. PMID:22412003
Fadyl, Joanna K; Nicholls, David A
Research interviews are a widely used method in qualitative health research and have been adapted to suit a range of methodologies. Just as it is valuable that new approaches are explored, it is also important to continue to examine their appropriate use. In this article, we question the suitability of research interviews for 'history of the present' studies informed by the work of Michel Foucault - a form of qualitative research that is being increasingly employed in the analysis of healthcare systems and processes. We argue that several aspects of research interviewing produce philosophical and methodological complications that can interfere with achieving the aims of the analysis in this type of study. The article comprises an introduction to these tensions and examination of them in relation to key aspects of a Foucauldian philosophical position, and discussion of where this might position researchers when it comes to designing a study. © 2012 Blackwell Publishing Ltd.
The article explores how the Internet and email offer space for participants to think and make sense of their experiences in the qualitative research encounter. It draws on a research study that used email interviewing to generate online narratives to understand academic lives and identities through research encounters in virtual space. The…
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.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. 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
Xie, Yan-ming; Liao, Xing
It is not finally concluded how to standardize the use of qualitative research in the world. Qualitative researchers disagree with each other about this issue. As we know, there have been a large number of articles written in different ways about qualitative research due to the "flexibility", one of its features. Qualitative research is quite different from quantitative research which is easy to control its quality and quality assessment. A series of criteria has been set up for quantitative research. However qualitative research needs to be improved in these aspects, in which qualitative interviews are mostly used at home and abroad at present. Hence, it becomes an important and urgent issue for qualitative researchers to standardly control and assess the quality of qualitative interview.
Affleck, William; Glass, Kc; Macdonald, Mary Ellen
The semistructured, open-ended interview has become the gold standard for qualitative health research. Despite its strengths, the long interview is not well suited for studying topics that participants find difficult to discuss, or for working with those who have limited verbal communication skills. A lack of emotional expression among male research participants has repeatedly been described as a significant and pervasive challenge by health researchers in a variety of different fields. This article explores several prominent theories for men's emotional inexpression and relates them to qualitative health research. The authors argue that investigators studying emotionally sensitive topics with men should look beyond the long interview to methods that incorporate other modes of emotional expression. This article concludes with a discussion of several such photo-based methods, namely, Photovoice, Photo Elicitation, and Visual Storytelling.
Wackowski, Olivia A.; Hammond, David; O?Connor, Richard J.; Strasser, Andrew A.; Delnevo, Cristine D.
Tobacco warning labels are important sources of risk information but research historically has been cigarette-centric. This qualitative study aimed to inform future direction and research on warnings for e-cigarettes. Between June and August 2016, we conducted interviews with 10 researchers with expertise in tobacco warning label research. Interviewees were registrants of a 2016 National Cancer Institute grantee meeting on tobacco warnings. Several participants agreed that the Food and Drug A...
Interviews in qualitative research may sometimes employ stimulus material as a means of eliciting richer data. However, scant consideration has been given to the use of poetry for this purpose, especially within the field of poetry education research. This article seeks to address the gap in the literature by illustrating how the use of poetry as…
Saywitz, Karen; Camparo, Lorinda B; Romanoff, Anna
Research on child interviewing has burgeoned over the past 25 years as expectations about children's agency, competence, and participation in society have changed. This article identifies recent trends in research, policy, and theory with implications for the practice of interviewing children in cases of contested divorce and for the weight to be given the information children provide. A number of fields of relevant research are identified, including studies of families who have participated in the family law system, studies of child witnesses in the field, experimental studies of the effects of interview techniques on children's memory and suggestibility, and ethnographic methods that elicit children's views of their own experiences. Finally, a set of 10 principles for practice are delineated based on the best available science. Copyright 2010 John Wiley & Sons, Ltd.
Mazanderani, Fadhila; Paparini, Sara
Since the earliest days of the HIV/AIDS epidemic, talking about the virus has been a key way affected communities have challenged the fear and discrimination directed against them and pressed for urgent medical and political attention. Today, HIV/AIDS is one of the most prolifically and intimately documented of all health conditions, with entrenched infrastructures, practices and technologies--what Vinh-Kim Nguyen has dubbed 'confessional technologies'--aimed at encouraging those affected to share their experiences. Among these technologies, we argue, is the semi-structured interview: the principal methodology used in qualitative social science research focused on patient experiences. Taking the performative nature of the research interview as a talking technology seriously has epistemological implications not merely for how we interpret interview data, but also for how we understand the role of research interviews in the enactment of 'life with HIV'. This paper focuses on one crucial aspect of this enactment: the contemporary 'normalisation' of HIV as 'just another' chronic condition--a process taking place at the level of individual subjectivities, social identities, clinical practices and global health policy, and of which social science research is a vital part. Through an analysis of 76 interviews conducted in London (2009-10), we examine tensions in the experiential narratives of individuals living with HIV in which life with the virus is framed as 'normal', yet where this 'normality' is beset with contradictions and ambiguities. Rather than viewing these as a reflection of resistances to or failures of the enactment of HIV as 'normal', we argue that, insofar as these contradictions are generated by the research interview as a distinct 'talking technology', they emerge as crucial to the normative (re)production of what counts as 'living with HIV' (in the UK) and are an inherent part of the broader performative 'normalisation' of the virus. Copyright © 2015
Full Text Available This paper examines the narration of developmental disability through interviews between participants, researchers, and members of community organizations serving the disabled population, in the context of university-community collaborations. These kinds of collaborations are extremely important for researching vulnerable or hard-to-reach populations, which often face lower levels of physical, mental, and social well-being as a consequence of shame, stigma, or discrimination. Community collaboration can thus be invaluable for reaching members of marginalized populations, who may be difficult to locate or otherwise avoid contact with outsiders, because it provides members of a research team with local knowledge of a population, a means of accessing possible participants, and legitimation for the project. I suggest, however, that although the researcher's externality may initially invite skepticism toward the investigation from participants, it can also benefit them by providing a forum for catharsis. Based on a pilot study I conducted with a community advocacy organization for the disabled, I note that some participants expressed an appreciation for being able to discuss certain emotions and experiences during interviews with an outsider who was not involved as a caseworker. I conclude that the presence of a trusted community advocate and a researcher at an interview affects a participant's narrative by providing a safe space for participants to voice their stories to outsiders.
Full Text Available This article problematizes conventional qualitative educational research through a process of reading observation and interview in rhizomatic research. Such an approach to doing research brings together Multiple Literacies Theory and rhizoanalysis, innovative practices with transdisciplinary implications. This article contributes to on-going research regarding the emergence of multiple literacies and rhizoanalysis as a way to experiment in disrupting conventional research concepts, in this case, observations and interviews. Rhizoanalysis is proposed because of its non-hierarchical and non-linear perspective to conducting qualitative research. In a similar manner, Multiple Literacies Theory seeks to release school-based literacy from its privileged position and unfold literacy as multiple and non-hierarchical. This theoretical and practical stance to educational research is deployed in an assemblage that includes a study of multiple writing systems with 5- to 8 –year- old multilingual children. Reading observation and interviews through the lens of rhizoanalysis and Multiple Literacies Theory becomes an exploration in reconceptualization of qualitative research.
den Breejen, Elvira M E; Hermens, Rosella P M G; Galama, Wienke H; Willemsen, Wim N P; Kremer, Jan A M; Nelen, Willianne L D M
Patient involvement in scoping the guideline is emphasized, but published initiatives actively involving patients are generally limited to the writing and reviewing phase. To assess patients' added value to the scoping phase of a multidisciplinary guideline on infertility. Qualitative interview study. We conducted interviews among 12 infertile couples and 17 professionals. We listed and compared the couples' and professionals' key clinical issues (=care aspects that need improvement) to be addressed in the guideline according to four domains: current guidelines, professionals, patients and organization of care. Main key clinical issues suggested by more than three quarters of the infertile couples and/or at least two professionals were identified and compared. Overall, we identified 32 key clinical issues among infertile couples and 23 among professionals. Of the defined main key clinical issues, infertile couples mentioned eight issues that were not mentioned by the professionals. These main key clinical issues mainly concerned patient-centred (e.g. poor information provision and poor alignment of care) aspects of care on the professional and organizational domain. Both groups mentioned two main key clinical issues collectively that were interpreted differently: the lack of emotional support and respect for patients' values. Including patients from the first phase of the guideline development process leads to valuable additional main key clinical issues for the next step of a multidisciplinary guideline development process and broadens the scope of the guideline, particularly regarding patient-centredness and organizational issues from a patients' perspective. © The Author 2016. Published by Oxford University Press in association with the International Society for Quality in Health Care; all rights reserved.
Harm H. Tillema
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.
Full Text Available Gerald (Gerry Rubin, pioneer in Drosophila genetics, is Founding Director of the HHMI-funded Janelia Research Campus. In this interview, Gerry recounts key events and collaborations that have shaped his unique approach to scientific exploration, decision-making, management and mentorship – an approach that forms the cornerstone of the model adopted at Janelia to tackle problems in interdisciplinary biomedical research. Gerry describes his remarkable journey from newcomer to internationally renowned leader in the fly field, highlighting his contributions to the tools and resources that have helped establish Drosophila as an important model in translational research. Describing himself as a ‘tool builder’, his current focus is on developing approaches for in-depth study of the fly nervous system, in order to understand key principles in neurobiology. Gerry was interviewed by Ross Cagan, Senior Editor of Disease Models & Mechanisms.
Paradiso de Sayu, Rebecca; Chanmugam, Amy
Although the concept of empowerment is a key principle of community-based participatory research (CBPR), little is known about how academic and community partners perceive empowerment during a CBPR process. CBPR partners' perceptions of the process were explored using semi-structured interviews with both partners in 10 CBPR partnerships that had completed projects addressing social determinants of health. Dyadic interview analysis was employed to understand dynamics within and across partnerships. Five partnerships showed no differences in perceptions of empowerment. Four had minor discrepancies. Only one partnership varied considerably between partners, where the community partner perceived less empowerment regarding determining the study topic and overall control, influence, and respect throughout the process. This article discusses implications of findings for CBPR. Evaluating partners' perceived empowerment throughout a CBPR project might reveal areas to adjust, as not all projects with quantifiably successful outcomes involve processes that are successful in terms of empowerment. © The Author(s) 2015.
Fleischman, Alan R
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.
Ranney, Megan L.; Meisel, Zachary; Choo, Esther K.; Garro, Aris; Sasson, Comilla; Morrow, Kathleen
Qualitative methods are increasingly being used in emergency care research. Rigorous qualitative methods can play a critical role in advancing the emergency care research agenda by allowing investigators to generate hypotheses, gain an in-depth understanding of health problems or specific populations, create expert consensus, and develop new intervention and dissemination strategies. In Part I of this two-article series, we provided an introduction to general principles of applied qualitative health research and examples of its common use in emergency care research, describing study designs and data collection methods most relevant to our field (observation, individual interviews, and focus groups). Here in Part II of this series, we outline the specific steps necessary to conduct a valid and reliable qualitative research project, with a focus on interview-based studies. These elements include building the research team, preparing data collection guides, defining and obtaining an adequate sample, collecting and organizing qualitative data, and coding and analyzing the data. We also discuss potential ethical considerations unique to qualitative research as it relates to emergency care research. PMID:26284572
Ranney, Megan L; Meisel, Zachary F; Choo, Esther K; Garro, Aris C; Sasson, Comilla; Morrow Guthrie, Kate
Qualitative methods are increasingly being used in emergency care research. Rigorous qualitative methods can play a critical role in advancing the emergency care research agenda by allowing investigators to generate hypotheses, gain an in-depth understanding of health problems or specific populations, create expert consensus, and develop new intervention and dissemination strategies. In Part I of this two-article series, we provided an introduction to general principles of applied qualitative health research and examples of its common use in emergency care research, describing study designs and data collection methods most relevant to our field (observation, individual interviews, and focus groups). Here in Part II of this series, we outline the specific steps necessary to conduct a valid and reliable qualitative research project, with a focus on interview-based studies. These elements include building the research team, preparing data collection guides, defining and obtaining an adequate sample, collecting and organizing qualitative data, and coding and analyzing the data. We also discuss potential ethical considerations unique to qualitative research as it relates to emergency care research. © 2015 by the Society for Academic Emergency Medicine.
Price, Marva M
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...
Price, Marva M
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...
Price, Marva M
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...
Minaya, Gabriela E; Fuentes-Delgado, Duilio J; Ugalde, Antonio; Homedes, Núria
Most regulatory agencies conduct clinical trial (CT) site inspections, but the experiences and behaviors of research subjects and their knowledge of the rights and obligations that ensue from participating in a CT are seldom explored. The authors assessed the technical feasibility of incorporating interviews with participants in CT inspections. This article analyzes the responses of 13 CT participants, 14% ( n = 96) of those included in three tuberculosis (TB) CTs. Participants did not object to being interviewed and provided information not obtained during regular inspections. Participants were appreciative of the agency's concern for the integrity of the CT process. Most interviewees did not understand the consent form and were unaware that they were participating in an experiment with unapproved new drugs. Participants' decision to enroll in CT related to undue inducement and therapeutic misconception. Some patients' behaviors, undisclosed to researchers, could have compromised the integrity of the data collected.
Drawing on my doctoral experience the aim of this article is to present my transition from practitioner to novice researcher and the challenges I encountered when undertaking qualitative in-depth interviews. The contents of my research diary were coded for words, sentences and paragraphs and were then grouped into themes and subsequently organised into concepts and categories. The analysis identified one core category: 'changing states: learning to become a researcher'. The related categories included 'guessing responses', 'confusing boundaries' and 'revealing hidden concepts'. These concepts provide a description of how I learnt to become a researcher and became a changed state. The paper provides practitioners with practical examples of my transition from practitioner to novice researcher. I offer some tips for practitioners who wish to undertake research in their clinical role.
Sampling is central to the practice of qualitative methods, but compared with data collection and analysis, its processes are discussed relatively little. A four-point approach to sampling in qualitative interview-based research is presented and critically discussed in this article, which integrates theory and process for the following: (1) Defining a sample universe, by way of specifying inclusion and exclusion criteria for potential participation; (2) Deciding upon a sample size, through th...
Background Qualitative research is undertaken with randomized controlled trials of health interventions. Our aim was to explore the perceptions of researchers with experience of this endeavour to understand the added value of qualitative research to the trial in practice. Methods A telephone semi-structured interview study with 18 researchers with experience of undertaking the trial and/or the qualitative research. Results Interviewees described the added value of qualitative research for the trial, explaining how it solved problems at the pretrial stage, explained findings, and helped to increase the utility of the evidence generated by the trial. From the interviews, we identified three models of relationship of the qualitative research to the trial. In ‘the peripheral’ model, the trial was an opportunity to undertake qualitative research, with no intention that it would add value to the trial. In ‘the add-on’ model, the qualitative researcher understood the potential value of the qualitative research but it was viewed as a separate and complementary endeavour by the trial lead investigator and wider team. Interviewees described how this could limit the value of the qualitative research to the trial. Finally ‘the integral’ model played out in two ways. In ‘integral-in-theory’ studies, the lead investigator viewed the qualitative research as essential to the trial. However, in practice the qualitative research was under-resourced relative to the trial, potentially limiting its ability to add value to the trial. In ‘integral-in-practice’ studies, interviewees described how the qualitative research was planned from the beginning of the study, senior qualitative expertise was on the team from beginning to end, and staff and time were dedicated to the qualitative research. In these studies interviewees described the qualitative research adding value to the trial although this value was not necessarily visible beyond the original research team due
O'Cathain, Alicia; Goode, Jackie; Drabble, Sarah J; Thomas, Kate J; Rudolph, Anne; Hewison, Jenny
Qualitative research is undertaken with randomized controlled trials of health interventions. Our aim was to explore the perceptions of researchers with experience of this endeavour to understand the added value of qualitative research to the trial in practice. A telephone semi-structured interview study with 18 researchers with experience of undertaking the trial and/or the qualitative research. Interviewees described the added value of qualitative research for the trial, explaining how it solved problems at the pretrial stage, explained findings, and helped to increase the utility of the evidence generated by the trial. From the interviews, we identified three models of relationship of the qualitative research to the trial. In 'the peripheral' model, the trial was an opportunity to undertake qualitative research, with no intention that it would add value to the trial. In 'the add-on' model, the qualitative researcher understood the potential value of the qualitative research but it was viewed as a separate and complementary endeavour by the trial lead investigator and wider team. Interviewees described how this could limit the value of the qualitative research to the trial. Finally 'the integral' model played out in two ways. In 'integral-in-theory' studies, the lead investigator viewed the qualitative research as essential to the trial. However, in practice the qualitative research was under-resourced relative to the trial, potentially limiting its ability to add value to the trial. In 'integral-in-practice' studies, interviewees described how the qualitative research was planned from the beginning of the study, senior qualitative expertise was on the team from beginning to end, and staff and time were dedicated to the qualitative research. In these studies interviewees described the qualitative research adding value to the trial although this value was not necessarily visible beyond the original research team due to the challenges of publishing this research
Garbutt, Ruth; Tattersall, John; Dunn, Jo; Boycott-Garnett, Rachel
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.)
Rieckmann, Traci R; Abraham, Amanda J; Bride, Brian E
Despite considerable empirical evidence that psychosocial interventions improve addiction treatment outcomes across populations, implementation remains problematic. A small body of research points to the importance of research network participation as a facilitator of implementation; however, studies examined limited numbers of evidence-based practices. To address this gap, the present study examined factors impacting implementation of motivational interviewing (MI). This study used data from a national sample of privately funded treatment programs (n = 345) and programs participating in the National Drug Abuse Treatment Clinical Trials Network (CTN) (n = 156). Data were collected via face-to-face interviews with program administrators and clinical directors (2007-2009). Analysis included bivariate t tests and chi-square tests to compare private and CTN programs, and multivariable logistic regression of MI implementation. A majority (68.0%) of treatment programs reported use of MI. Treatment programs participating in the CTN (88.9%) were significantly more likely to report use of MI compared with non-CTN programs (58.5%; P Motivational Interviewing Network of Trainers as compared with private programs (56.1%; P tool were more likely to use MI, whereas programs placing greater emphasis on confrontational group therapy were less likely to use MI. Findings suggest the critical role of research network participation, access to psychiatrists, and organizational compatibility in adoption and sustained use of MI.
This paper analyzes the power relation between the interviewer and the interviewee in the qualitative research interview methodology. The paper sets out to grapple with the extent to which the dynamisms in power shifts influence data collection and analysis in the interview methodology. The exploration of power shifts in the qualitative research…
Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah
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.
Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah
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
Gilstrap, Livia L.
Despite suggestibility researchers' focus on adult behaviors that distort children's reports, whether behaviors examined in experimental work are used in the field is unknown. The current study presents a mutually exclusive and exhaustive hierarchical coding system that reflects interview questioning behaviors of concern in experimental work. The…
Adriansen, Hanne Kirstine
The aim of this paper is to explain and discuss timeline interviews as a method for doing life history research. It is a ‘how to’ article explaining the strengths and weaknesses of using a timeline when conducting qualitative interviews. The method allows the interviewee to participate...... for life story research, it can also be used for ther types of studies where interviews are made....... in the reporting of the interview which may give raise to ownership and sharing of the analytical power in the interview situation. Exactly for this reason, it may not be the most appropriate method for interviewing elites or for conducting insider interviews where positionality can be at play. The use...
Yost, Megan R.; Chmielewski, Jennifer F.
This commentary is intended to serve as a companion to the authors' original research article ("Psychosocial Influences on Bisexual Women's Body Image Negotiating Gender and Sexuality," "Psychology of Women Quarterly," v37 n2 p224-241 Jun 2013) and to contribute to the conversation on feminist research methods. In it,…
Ryan, Sara; Ziebland, Sue
There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in-depth interviews with people, or carers of people, with long-term conditions, we explore how pets feature in people's narrative accounts of their experiences. Our findings demonstrate the multifaceted nature of people's relationships with pets, and the embedded and embodied ways in which human-nonhuman interactions are played out in narratives of chronic illness. Our study differs from other work on pets and health in that, by returning to the interview video recordings, we were able to explore the sometimes three-way interactions, the co(a)gency, between participants, pets and researchers. Pets were often presented as important family members, yet the researchers' responses to the presence or talk about pets was often markedly different from their reactions to other household members. We conclude with cautioning against the downgrading of pets in narrative health research. Narrative approaches may invite participants to talk about what is important to them, yet they clearly have limitations in practice. © 2015 The Authors. Sociology of Health & Illness © 2015 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.
Lorenc, Theo; Felix, Lambert; Petticrew, Mark; Melendez-Torres, G J; Thomas, James; Thomas, Sian; O'Mara-Eves, Alison; Richardson, Michelle
Complex or heterogeneous data pose challenges for systematic review and meta-analysis. In recent years, a number of new methods have been developed to meet these challenges. This qualitative interview study aimed to understand researchers' understanding of complexity and heterogeneity and the factors which may influence the choices researchers make in synthesising complex data. We conducted interviews with a purposive sample of researchers (N = 19) working in systematic review or meta-analysis across a range of disciplines. We analysed data thematically using a framework approach. Participants reported using a broader range of methods and data types in complex reviews than in traditional reviews. A range of techniques are used to explore heterogeneity, but there is some debate about their validity, particularly when applied post hoc. Technical considerations of how to synthesise complex evidence cannot be isolated from questions of the goals and contexts of research. However, decisions about how to analyse data appear to be made in a largely informal way, drawing on tacit expertise, and their relation to these broader questions remains unclear.
Mjøsund, Nina Helen; Vinje, Hege Forbech; Eriksson, Monica; Haaland-Øverby, Mette; Jensen, Sven Liang; Kjus, Solveig; Norheim, Irene; Portaasen, Inger-Lill; Espnes, Geir Arild
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.
Henshaw, Marie; Spivak, Benjamin; Thomas, Stuart D. M.
Background: Several jurisdictions mandate the presence of an independent support person during police interviews with vulnerable people. The current study investigated police officers' experiences and perceptions of these volunteers during interviews with people with intellectual disability(ies) (ID). Methods: The sample comprised 229 police…
Molyneux, Sassy; Tsofa, Benjamin; Barasa, Edwine; Nyikuri, Mary Muyoka; Waweru, Evelyn Wanjiku; Goodman, Catherine; Gilson, Lucy
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.
Kayama, Mami; Gregg, Misuzu F; Asahara, Kiyomi; Yamamoto-Mitani, Noriko; Okuma, Keiko; Ohta, Kikuko; Kinoshita, Yasuhito
This study aimed to describe the process of mentoring doctoral students for qualitative research in Japanese graduate programs in nursing. Nine experienced faculty-seven nurse researchers and two sociologists-were interviewed. Participants were asked about their process of mentoring students for qualitative nursing dissertations. Data analysis was conducted using a qualitative descriptive method. Participants' age ranged from 48 to 60 years. The first theme in the mentoring process is about the individualized, one-on-one mentorship process. The second theme occurs in a group process. The third theme is coordinating mentors and establishing a network to support the evaluation system. The mentoring processes identified in this study will be useful for future faculty development. The study elucidated much room for improvement in doctoral education programs for qualitative research methods in nursing science. Copyright 2013, SLACK Incorporated.
Armour, Carol; Brillant, Martha; Krass, Ines
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.
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
Andresen, Kristoffer; Laursen, Jannie; Rosenberg, Jacob
Young researchers may experience difficulties when writing scientific articles for publication in biomedical journals. Various methods may facilitate the writing process including outlining the paper before the actual writing and using dictation instead of writing the first draft. The aim of this study was to investigate the experiences and difficulties for young, experienced researchers when writing articles using a detailed outline and dictation of the first draft. We used qualitative focus group interviews and the study was reported according to the COnsolidated criteria for REporting Qualitative research guideline. Participants were sampled from a group of researchers participating in a writing retreat/course. The interviews were recorded on a digital recorder and transcribed. The text was analyzed according to content analysis and coded and condensed into themes and subthemes. Groups of participants were added until data saturation was reached. A total of 14 researchers participated (9 women and 5 men). Their clinical experience was median (range) of 6 (1-11) years since graduation from medical school. Two themes arose during the analyses of the data: "Process guidance with the outline as the map" and "arrival at dictation." The outline was used in the preparation phase leading up to the day of dictation and was used in collaboration with co-authors and supervisors. The participants found it to be a useful tool for preparing the manuscript and dictating their initial first full draft. Experienced young researchers found beneficial effects of using a structured outline to prepare for dictation of scientific articles. The outline was a tool that would develop in close collaboration with co-authors and mentors. With dictation, a full first draft of a manuscript can be produced in a few hours. Participants positively evaluated this structured and reproducible way of producing scientific articles.
Wackowski, Olivia A.; Hammond, David; O’Connor, Richard J.; Strasser, Andrew A.; Delnevo, Cristine D.
Tobacco warning labels are important sources of risk information but research historically has been cigarette-centric. This qualitative study aimed to inform future direction and research on warnings for e-cigarettes. Between June and August 2016, we conducted interviews with 10 researchers with expertise in tobacco warning label research. Interviewees were registrants of a 2016 National Cancer Institute grantee meeting on tobacco warnings. Several participants agreed that the Food and Drug Administration’s new nicotine addiction warning for e-cigarettes could be informative but that it might not resonate with young people. Many agreed that more than one warning would be important as e-cigarette science evolves and that research on additional warning themes (e.g., nicotine exposure, harmful constituents) and execution styles (including use of pictorials) was important. Participants were somewhat mixed about the use of reduced-risk messages within e-cigarette warnings, but agreed that research on how to communicate about cigarette/e-cigarette relative risks was needed. Overall, more research is needed on tobacco warnings for non-cigarette products, including on the message content, placement, execution and potential impact on audiences’ product knowledge, risk perceptions and use intentions. This is particularly needed for products such as e-cigarettes which may have harm-reduction potential relative to cigarettes and require unique considerations. PMID:28708124
Wackowski, Olivia A; Hammond, David; O'Connor, Richard J; Strasser, Andrew A; Delnevo, Cristine D
Tobacco warning labels are important sources of risk information but research historically has been cigarette-centric. This qualitative study aimed to inform future direction and research on warnings for e-cigarettes. Between June and August 2016, we conducted interviews with 10 researchers with expertise in tobacco warning label research. Interviewees were registrants of a 2016 National Cancer Institute grantee meeting on tobacco warnings. Several participants agreed that the Food and Drug Administration's new nicotine addiction warning for e-cigarettes could be informative but that it might not resonate with young people. Many agreed that more than one warning would be important as e-cigarette science evolves and that research on additional warning themes (e.g., nicotine exposure, harmful constituents) and execution styles (including use of pictorials) was important. Participants were somewhat mixed about the use of reduced-risk messages within e-cigarette warnings, but agreed that research on how to communicate about cigarette/e-cigarette relative risks was needed. Overall, more research is needed on tobacco warnings for non-cigarette products, including on the message content, placement, execution and potential impact on audiences' product knowledge, risk perceptions and use intentions. This is particularly needed for products such as e-cigarettes which may have harm-reduction potential relative to cigarettes and require unique considerations.
Buescher, Thomas M.
An interview with T. Cook, author of works on the use of research and evaluation theory and design, touches on such topics as practical evaluation, planning programs with evaluation or research design, and evaluation of programs for gifted students. (CL)
Peck, Jessica A; Levashina, Julia
Impression management (IM) is pervasive in interview and job performance settings. We meta-analytically examine IM by self- and other-focused tactics to establish base rates of tactic usage, to understand the impact of tactics on interview and job performance ratings, and to examine the moderating effects of research design. Our results suggest IM is used more frequently in the interview rather than job performance settings. Self-focused tactics are more effective in the interview rather than in job performance settings, and other-focused tactics are more effective in job performance settings rather than in the interview. We explore several research design moderators including research fidelity, rater, and participants. IM has a somewhat stronger impact on interview ratings in lab settings than field settings. IM also has a stronger impact on interview ratings when the target of IM is also the rater of performance than when the rater of performance is an observer. Finally, labor market participants use IM more frequently and more effectively than students in interview settings. Our research has implications for understanding how different IM tactics function in interview and job performance settings and the effects of research design on IM frequency and impact.
van der Graaf, Peter; Forrest, Lynne F; Adams, Jean; Shucksmith, Janet; White, Martin
With increasing financial pressures on public health in England, the need for evidence of high relevance to policy is now stronger than ever. However, the ways in which public health professionals (PHPs) and researchers relate to one another are not necessarily conducive to effective knowledge translation. This study explores the perspectives of PHPs and researchers when interacting, with a view to identifying barriers to and opportunities for developing practice that is effectively informed by research. This research focused on examples from two responsive research schemes, which provide university-based support for research-related enquiries from PHPs: the NIHR SPHR Public Health Practitioner Evaluation Scheme 1 and the responsive research service AskFuse 2 . We examined enquiries that were submitted to both between 2013 and 2015, and purposively selected eight enquiries for further investigation by interviewing the PHPs and researchers involved in these requests. We also identified individuals who were eligible to make requests to the schemes but chose not to do so. In-depth interviews were conducted with six people in relation to the PHPES scheme, and 12 in relation to AskFuse. The interviews were transcribed and analysed using thematic framework analysis. Verification and extension of the findings were sought in a stakeholder workshop. PHPs recognised the importance of research findings for informing their practice. However, they identified three main barriers when trying to engage with researchers: 1) differences in timescales; 2) limited budgets; and 3) difficulties in identifying appropriate researchers. The two responsive schemes addressed some of these barriers, particularly finding the right researchers to work with and securing funding for local evaluations. The schemes also supported the development of new types of evidence. However, other barriers remained, such as differences in timescales and the resources needed to scale-up research. An increased
Carduff, Emma; Murray, Scott A; Kendall, Marilyn
Qualitative longitudinal research is an evolving methodology, particularly within health care research. It facilitates a nuanced understanding of how phenomena change over time and is ripe for innovative approaches. However, methodological reflections which are tailored to health care research are scarce. This article provides a synthesised and practical account of the advantages and challenges of maintaining regular telephone contact between interviews with participants in a qualitative longitudinal study. Participants with metastatic colorectal cancer were interviewed at 3 time points over the course of a year. Half the group also received monthly telephone calls to explore the added value and the feasibility of capturing change as close to when it was occurring as possible. The data gathered from the telephone calls added context to the participants' overall narrative and informed subsequent interviews. The telephone calls meant we were able to capture change close to when it happened and there was a more evolved, and involved, relationship between the researcher and the participants who were called on a monthly basis. However, ethical challenges were amplified, boundaries of the participant/researcher relationship questioned, and there was the added analytical burden. The telephone calls facilitated a more nuanced understanding of the illness experience to emerge, when compared with the interview only group. The findings suggest that intensive telephone contact may be justified if retention is an issue, when the phenomena being studied is unpredictable and when participants feel disempowered or lack control. These are potential issues for research involving participants with long-term illness.
Gagliardi, Anna R; Dobrow, Mark J
Collaboration among researchers and research users, or integrated knowledge translation (IKT), enhances the relevance and uptake of evidence into policy and practice. However, it is not widely practiced and, even when well-resourced, desired impacts may not be achieved. Given that large-scale investment is not the norm, further research is needed to identify how IKT can be optimized. Interviews were conducted with researchers and research users (clinicians, managers) in a health care delivery (HCDO) and health care monitoring (HCMO) organization that differed in size and infrastructure, and were IKT-naïve. Basic qualitative description was used. Participants were asked about IKT activities and challenges, and recommendations for optimizing IKT. Data were analysed inductively using constant comparative technique. Forty-three interviews were conducted (28 HCDO, 15 HCMO) with 13 researchers, 8 clinicians, and 22 managers. Little to no IKT took place. Participants articulated similar challenges and recommendations revealing that a considerable number of changes were needed at the organizational, professional and individual levels. Given the IKT-absent state of participating organizations, this research identified a core set of conditions which must be addressed to prepare an environment conducive to IKT. These conditions were compiled into a framework by which organizations can plan for, or evaluate their capacity for IKT. The IKT capacity framework is relevant for organizations in which there is no current IKT activity. Use of the IKT framework may result in more organizations that are ready to initiate and establish IKT, perhaps ultimately leading to more, and higher-quality collaboration for health system innovation. Further research is needed to confirm these findings in other organizations not yet resourced for, or undertaking IKT, and to explore the resource implications and mechanisms for establishing the conditions identified here as essential to preparing for
Scott, Johnson; Listwin, Don
A new trend in research funding has emerged: directed philanthropy, in which the donor plays an active, hands-on role in managing the research by applying a "business model." Although such efforts now represent only a small portion of foundation funding, they have potentially far-reaching implications because (1) the approach of using a business model is being applied more broadly and (2) the success or failure of these efforts may portend the fate of larger translational efforts. The author conducted interviews with Scott Johnson of the Myelin Repair Foundation and Don Listwin of the Canary Foundation in the fall of 2006.
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
Brendan K. O'Rourke
Full Text Available Among the various approaches that have developed from FOUCAULT's work is an Anglophone discourse analysis that has attempted to combine FOUCAULTian insights with the techniques of Conversation Analysis. An important current methodological issue in this discourse analytical approach is its theoretical preference for "naturally occurring" rather than research interview data. A FOUCAULTian perspective on the interview as a research instrument, questions the idea of "naturally-occurring discourse". The "technology of the confessional" operates, not only within research interviews, but permeates other interactions as well. Drawing on FOUCAULT does not dismiss the problems of the interview as research instrument rather it shows they cannot be escaped by simply switching to more "natural" interactions. Combining these insights with recent developments within discourse analysis can provide analytical resources for, rather than barriers to, the discourse analysis of research interviews. To aid such an approach, we develop a four-way categorisation of analytical stances towards the research interview in discourse analysis. A demonstration of how a research interview might be subjected to a discourse analysis using elements of this approach is then provided. URN: urn:nbn:de:0114-fqs070238
Linda M. Ferguson
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.
Shield, Renée; Rosenthal, Marsha; Wetle, Terrie; Tyler, Denise; Clark, Melissa; Intrator, Orna
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.
Interviewers and respondents judged interview interactions during a survey of drug-related sentiments. Pronounced variability in interviewer-respondent judgements occurred in unanticipated ways related to gender, role, and ethnicity of participants. Positive interaction yielded different respondent cognitions and reports of illicit drug ingestion…
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...
Hossne, William Saad; Vieira, Sonia; De Freitas, Corina Bontempo Duca
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.
Holland, Suzanne; Kydd, Angela
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.
Norlyk, Annelise; Haahr, Anita; Hall, Elisabeth
To discuss ethical and methodological challenges related to in-depth interviews with patients and partners when interviewed together or separately. Increased interest in exploring illness phenomena from both patients' and partners' perspectives has emerged. The decision about how to collect data is challenging. Patients and partners can be interviewed separately or together; in both scenarios researchers face complex questions of methodology and ethics. This paper contributes to the ongoing debate on individual or joint interviewing and the effect of absence/presence of the partner on data collection. Discussion paper that draws on data from three phenomenological studies. Referring to three cases from our phenomenological studies, we discuss the different types of ethical and methodological dilemmas faced when undertaking joint and separate interviews with couples. Furthermore, we discuss how the unexpected presence of the partner potentially influences the data gathered from the patient. The cases demonstrate the interrelatedness of ethics and methodology in studies based on in-depth interviews with couples. Nurse researchers may be caught up in a dilemma between ethical concerns and methodological considerations. We argue that the presence of the partner during an interview session might influence the data and favour expressions of shared rather than individual experiences of the phenomenon studied. Furthermore, we argue that ethical concerns must be given higher priority than methodology when interviewing couples. An increased awareness of the tension between ethical and methodological challenges in joint or individual interviewing with patients and partners is necessary, as this issue is underexposed. © 2015 John Wiley & Sons Ltd.
Freyens, Anne; Dejeanne, Mélanie; Fabre, Elise; Rouge-Bugat, Marie-Eve; Oustric, Stéphane
To explore representations of the first pelvic examination (PE) among adolescents who had not yet had this examination and to identify their criteria for a positive experience of it. Qualitative study using semistructured interviews. Midi-Pyrénées and Auvergne in France. Adolescents aged 15 to 19 years who had never had a PE. Participants were recruited through snowball sampling and targeted sampling until data saturation was reached. Maximum variation was sought in the profiles of the study participants. Open-ended questions dealt with the interviewee's sources of information, knowledge of the PE, criteria for a positive PE experience, and representations of the PE itself. Verbatim transcripts were immediately subjected to longitudinal analysis with the context (researchers' notes) and key themes of the interview. Cross-sectional analysis was then performed. Many adolescents lack knowledge about the PE and believe that it is mandatory. According to study participants, the ideal PE would take place when they felt ready. They would be given adequate information in advance and the option of being accompanied by a friend or family member. They described the ideal examining room as warm, comfortable, and reassuring. The quality of their relationship with the examining physician would also affect their acceptance of this examination. An information session before the consultation for the PE would make it possible to reduce the patient's apprehension, improve her level of knowledge, and set the right tone for the upcoming PE, both for her and for the physician. Copyright© the College of Family Physicians of Canada.
Locock, Louise; Boylan, Anne-Marie; Snow, Rosamund; Staniszewska, Sophie
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.
de Vries, Martine C; Wit, Jan M; Engberts, Dirk P; Kaspers, Gertjan J L; van Leeuwen, Evert
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.
Lars Sundstrom is Director of Enterprise and Translation at the West of England Academic Health Sciences Network  (UK), a Professor of Practice in Translational Medicine and Co-Director of the Elizabeth Blackwell Institute for Health Research at Bristol University  (UK), and an honorary Professor of Medicine at Cardiff University (UK). He has extensive experience in translational medicine and clinical neurosciences, holding positions at several eminent universities. He has also held executive and board-level positions at several SMEs, developing new therapeutics for neurological conditions and tools for drug discovery. He has also been an advisor to several UK and local government task forces and to the European Commission and the European Federation of Pharmaceutical Industry Associations. He was a founding member of the European Brain Council in Brussels, and set up the Severnside Alliance for Translational Research, developing a regional network partnership to link clinical and basic scientists. He was also involved in the creation of Health Research Wales.
Gove, Dianne; Diaz-Ponce, Ana; Georges, Jean
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...
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
Scheer, L. van der; Garcia, E.; Laan, A.L. van der; Burg, S. van der; Boenink, M.
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
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)
Froggatt, Katherine; Goodman, Claire; Morbey, Hazel; Davies, Sue L; Masey, Helen; Dickinson, Angela; Martin, Wendy; Victor, Christina
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.
Sanderson, Saskia C; Diefenbach, Michael A; Zinberg, Randi; Horowitz, Carol R; Smirnoff, Margaret; Zweig, Micol; Streicher, Samantha; Jabs, Ethylin Wang; Richardson, Lynne D
Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.
Milne, Heather; Huby, Guro; Buckingham, Susan; Hayward, James; Sheikh, Aziz; Cresswell, Kathrin; Pinnock, Hilary
Sharing the electronic health-care record (EHR) during consultations has the potential to facilitate patient involvement in their health care, but research about this practice is limited. We used multichannel video recordings to identify examples and examine the practice of screen-sharing within 114 primary care consultations. A subset of 16 consultations was viewed by the general practitioner and/or patient in 26 reflexive interviews. Screen-sharing emerged as a significant theme and was explored further in seven additional patient interviews. Final analysis involved refining themes from interviews and observation of videos to understand how screen-sharing occurred, and its significance to patients and professionals. Eighteen (16%) of 114 videoed consultations involved instances of screen-sharing. Screen-sharing occurred in six of the subset of 16 consultations with interviews and was a significant theme in 19 of 26 interviews. The screen was shared in three ways: 'convincing' the patient of a diagnosis or treatment; 'translating' between medical and lay understandings of disease/medication; and by patients 'verifying' the accuracy of the EHR. However, patients and most GPs perceived the screen as the doctor's domain, not to be routinely viewed by the patient. Screen-sharing can facilitate patient involvement in the consultation, depending on the way in which sharing comes about, but the perception that the record belongs to the doctor is a barrier. To exploit the potential of sharing the screen to promote patient involvement, there is a need to reconceptualise and redesign the EHR. © 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Luo, Jing; Fu, Chang-geng; Xu, Hao
The inheritance of famous old traditional Chinese medicine (TCM) doctors plays an essential role in the fields of TCM research. Qualitative interviews allow for subjectivity and individuality within clinical experience as well as academic ideas of doctors, making it a potential appropriate research method for inheritance of famous old TCM doctors. We summarized current situations of inheritance research on famous old TCM doctors, and then discussed the feasibility of applying qualitative interviews in inheritance of famous old TCM doctors. By combining our experience in research on inheritance of famous old TCM doctors, we gave some advice on study design, interview implementation, data transcription and analyses , and report writing, providing a reference for further relevant research.
Nwaru, Bright I; Klemetti, Reija; Yuan, Shen; Kun, Huang; Wang, Yang; Hemminki, Elina
In household surveys, the use of data provided by relatives can increase response rates and generalisability of research findings. This study assessed the quality of data from relatives and the impact of the data source on the association between the use of prenatal care and pregnancy outcomes. Data for 3,673 new mothers and 293 proxy respondents were available from a house-hold survey in 2008-2009 in rural China. Analyses were performed using chi-square test, ANOVA, Kruskal-Wallis test, and logistic regression models. Differences in the studied variables were small, but proxy respondents were slightly more likely to have missing data than the new mothers. Differences and missing data were more common for the use of prenatal care and outcome variables (mode of delivery, place of delivery, birth weight, use of postnatal care, and gestational age at birth) than for the background characteristics of the participants. Husbands' reports were closer to the index reports than that of the other proxies. The associations between the exposures and outcomes were mostly similar between the proxy and index respondents. Relatives can be interviewed instead of women to study prenatal care without a substantial negative impact on study results. Studies using proxy respondents should stratify the analysis by type of respondents.
Tong, Allison; Crowe, Sally; Gill, John S; Harris, Tess; Hemmelgarn, Brenda R; Manns, Braden; Pecoits-Filho, Roberto; Tugwell, Peter; van Biesen, Wim; Wang, Angela Yee Moon; Wheeler, David C; Winkelmayer, Wolfgang C; Gutman, Talia; Ju, Angela; O'Lone, Emma; Sautenet, Benedicte; Viecelli, Andrea; Craig, Jonathan C
To describe the perspectives of clinicians and researchers on identifying, establishing and implementing core outcomes in haemodialysis and their expected impact. Face-to-face, semistructured interviews; thematic analysis. Twenty-seven centres across nine countries. Fifty-eight nephrologists (42 (72%) who were also triallists). We identified six themes: reflecting direct patient relevance and impact (survival as the primary goal of dialysis, enabling well-being and functioning, severe consequences of comorbidities and complications, indicators of treatment success, universal relevance, stakeholder consensus); amenable and responsive to interventions (realistic and possible to intervene on, differentiating between treatments); reflective of economic burden on healthcare; feasibility of implementation (clarity and consistency in definition, easily measurable, requiring minimal resources, creating a cultural shift, aversion to intensifying bureaucracy, allowing justifiable exceptions); authoritative inducement and directive (endorsement for legitimacy, necessity of buy-in from dialysis providers, incentivising uptake); instituting patient-centredness (explicitly addressing patient-important outcomes, reciprocating trial participation, improving comparability of interventions for decision-making, driving quality improvement and compelling a focus on quality of life). Nephrologists emphasised that core outcomes should be relevant to patients, amenable to change, feasible to implement and supported by stakeholder organisations. They expected core outcomes would improve patient-centred care and outcomes. © 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.
Norlyk, Annelise; Haahr, Anita; Hall, Elisabeth
to collect data is challenging. Patients and partners can be interviewed separately or together; in both scenarios researchers face complex questions of methodology and ethics. This paper contributes to the ongoing debate on individual or joint interviewing and the effect of absence/presence of the partner...... on data collection. Design Discussion paper that draws on data from three phenomenological studies. Data sources Referring to three cases from our phenomenological studies, we discuss the different types of ethical and methodological dilemmas faced when undertaking joint and separate interviews...... with couples. Furthermore, we discuss how the unexpected presence of the partner potentially influences the data gathered from the patient. Implication for nursing The cases demonstrate the interrelatedness of ethics and methodology in studies based on in-depth interviews with couples. Nurse researchers may...
Fowler, Cathrine; Wu, Cynthia; Lam, Winsome
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.
Nisio, Sigeko; Uematsu, Eisui
We here report an archival study undertaken by the method of an interview with Sekiguchi Tadashi, Professor Emeritus at the University of Tokyo. The theme covers the circumstances of the fusion research during the period (1965-1976) when fusion project was launched in Japan, and during the period (1970-1986) when JT-60 was initiated and subsequently developed. This interview was arranged as a part of the collaborative works organized with the Data and Planning Center of NIFS since 1999. (author)
Kapp, Marshall B
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 . 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 .
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
Matheson, Jennifer L.
Transcribing interview data is a time-consuming task that most qualitative researchers dislike. Transcribing is even more difficult for people with physical limitations because traditional transcribing requires manual dexterity and the ability to sit at a computer for long stretches of time. Researchers have begun to explore using an automated…
Galanter, Cathryn A.; Hundt, Stephanie R.; Goyal, Parag; Le, Jenna; Fisher, Prudence W.
Objective: The "DSM-IV-TR "criteria for a manic episode and bipolar disorder (BD) were developed for adults but are used for children. The manner in which clinicians and researchers interpret these criteria may have contributed to the increase in BD diagnoses given to youth. Research interviews are designed to improve diagnostic reliability and…
Ang, Dennis C; Kaleth, Anthony S; Bigatti, Silvia; Mazzuca, Steve; Saha, Chandan; Hilligoss, Janna; Lengerich, Mimi; Bandy, Robert
Fibromyalgia (FM), defined as the presence of both chronic widespread pain and the finding of 11/18 tender points on examination, is an illness associated with major personal and societal burden. Supervised aerobic exercise is an important treatment modality to improve patient symptoms. Unfortunately, adherence to an exercise regimen after a structured supervised program is disappointingly low. Since FM is a chronic illness, studies are needed to test strategies that would enhance exercise adherence in these individuals. Individuals who are able to adhere to exercise almost always maintain the symptomatic benefits of exercise. The objective of this paper was to describe the protocol of the Research to Encourage Exercise for Fibromyalgia (REEF). REEF is a randomized attention-controlled trial that seeks to test the efficacy of 6 sessions of telephone delivered motivational interviewing (MI) that targets exercise adherence to improve FM-relevant clinical outcomes (i.e., physical function and pain severity). The trial has recently completed enrolling 216 subjects, and randomization has resulted in well-balanced groups. Details on the study design, MI program, and treatment fidelity are provided in the paper. Outcome assessments at week 12, week 24 and week 36 will test the immediate, intermediate and long-term effects of exercise-based MI on adherence (as measured by the Community Health Activities Model Program for Seniors/CHAMPS and accelerometer) and clinical outcomes. When completed, REEF will determine whether exercise-based MI could be utilized as a management strategy to sustain the clinical benefits of exercise for FM. Copyright © 2010 Elsevier Inc. All rights reserved.
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
Kaltoft, Mette Kjer; Nielsen, Jesper Bo; Salkeld, Glenn
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...
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.
Moule, Pam; Davies, Rosie
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.
Paul, C; Holt, J
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
Henshon, Suzanna E.
This article presents an interview with David W. Chan, founding director of the Program for the Gifted and Talented at the Chinese University of Hong Kong. Chan has worked at the university for nearly 30 years, first in the Department of Psychiatry and then in the Department of Educational Psychology. Currently, he is also an adjunct professor of…
This study looks briefly at work done in the field of teacher selection. It then examines the interviewing arrangements at Balls Park College (Australia) in 1970-71, when candidates were being selected for the teacher training course which began in October 1971. An attempt is made to discern relationships existing among: (1) the data available to…
This article presents a dialogic qualitative interview design for a narrative study of six international UK university students' motivation for learning English. Based on the work of Mikhail Bakhtin, this design was developed in order to address the limitations of member-checking [Lincoln, Y. S., and E. G. Guba. 1985. "Naturalistic…
Ricardo Eccard da Silva
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.
Tanner Stapleton, Lynlee R; Dunkel Schetter, Christine; Dooley, Larissa N; Guardino, Christine M; Huynh, Jan; Paek, Cynthia; Clark-Kauffman, Elizabeth; Schafer, Peter; Woolard, Richard; Lanzi, Robin Gaines
Chronic stress is implicated in many theories as a contributor to a wide range of physical and mental health problems. The current study describes the development of a chronic stress measure that was based on the UCLA Life Stress Interview (LSI) and adapted in collaboration with community partners for use in a large community health study of low-income, ethnically diverse parents of infants in the USA (Community Child Health Network [CCHN]). We describe the instrument, its purpose and adaptations, implementation, and results of a reliability study in a subsample of the larger study cohort. Interviews with 272 mothers were included in the present study. Chronic stress was assessed using the CCHN LSI, an instrument designed for administration by trained community interviewers to assess four domains of chronic stress, each rated by interviewers. Significant correlations ranging from small to moderate in size between chronic stress scores on this measure, other measures of stress, biomarkers of allostatic load, and mental health provide initial evidence of construct and concurrent validity. Reliability data for interviewer ratings are also provided. This relatively brief interview (15 minutes) is available for use and may be a valuable tool for researchers seeking to measure chronic stress reliably and validly in future studies with time constraints.
Small, Will; Maher, Lisa; Kerr, Thomas
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.
Virtual intercultural communication is of great interest in intercultural research. How can a researcher gain access to this field of investigation if s/he does not or only partially speaks the languages used by the subjects? This study is an example of how categories relevant to research can be accessed through in-depth interviews. The interview…
Although scholarship has addressed issues around serving international students in U.S. and Canadian libraries, reports on how Chinese graduate students use information in Chinese universities, especially for a particular discipline, are rare. In this study, the author interviewed 15 graduate students and researchers in a top-ranked chemistry…
Ward, Brian W; Ridolfo, Heather; Creamer, Lauren; Gray, Caroline
The 1994-1995 National Health Interview Survey on Disability (NHIS-D) has been one of the most unique and important data sources for studying disability, impairment, and health in the United States. In celebration of the NHIS-D's twenty-year anniversary, we created an extensive bibliography (n=212) of research that has used these data.
Ward, Brian W.; Ridolfo, Heather; Creamer, Lauren; Gray, Caroline
The 1994–1995 National Health Interview Survey on Disability (NHIS-D) has been one of the most unique and important data sources for studying disability, impairment, and health in the United States. In celebration of the NHIS-D’s twenty-year anniversary, we created an extensive bibliography (n=212) of research that has used these data. PMID:26640424
Ward, Brian W.; Ridolfo, Heather; Creamer, Lauren; Gray, Caroline
The 1994–1995 National Health Interview Survey on Disability (NHIS-D) has been one of the most unique and important data sources for studying disability, impairment, and health in the United States. In celebration of the NHIS-D’s twenty-year anniversary, we created an extensive bibliography (n=212) of research that has used these data.
Colella, H.; Hubenthal, M.; Brudzinski, M. R.
The benefits for student participants of undergraduate research opportunities have been well documented. However, advancements in information and communications technologies (ICT) and cultural shifts around online education and virtual peer-to-peer interaction have lead to new models in which to structure such experiences. Currently, these ICT-enabled Research Experiences for Undergraduates (REU) programs connect geographically distributed interns in supportive e-learning communities while maintaining a traditional local mentoring arrangement. To document and explore the effects of distributed REU Sites in more depth, six interns from such a program, the Incorporated Research Institution for Seismology (IRIS) REU, were selected at random and asked to be interviewed about the REU experience. The primary targets of the interviews are to understand the mentor/mentee relationships, feeling of support and development and value of near-peer and far-peer relationships throughout their internship in a distributed REU program, and whether they receive the training necessary to gain confidence as a researcher. We also examine the various communication technologies as well as best practices and strategies that can increase intern connectedness. Pre-internship interviews were conducted in-person at the start of the centralized internship orientation week, while post-internship interviews were virtual (e.g. video chat with Skype or Google Hangout). These semi-structured interviews have full audio recordings and subsequent transcriptions. An additional, virtual follow-up interview will be conducted next spring after the interns have an opportunity to attend and present their research at a national conference (e.g., AGU). Interview material will be analyzed through a process of coding, sorting, local integration, and inclusive integration. Results will also be triangulated with pre- and post- survey data both from participants and other survey data from previous years of the IRIS
Stratford, Anthony; Brophy, Lisa; Castle, David; Harvey, Carol; Robertson, Joanne; Corlett, Philip; Davidson, Larry; Everall, Ian
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.
Bolis, Ivan; Brunoro, Claudio; Sznelwar, Laerte Idal
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.
Greco, Dirceu; Diniz, Nilza Maria
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
Jamison, James; Sutton, Stephen; Mant, Jonathan; De Simoni, Anna
To determine the appropriateness of an online forum compared with face-to-face interviews as a source of data for qualitative research on adherence to secondary prevention medications after stroke. A comparison of attributes of two data sources, interviews and a forum, using realistic evaluation; a comparison of themes around adherence according to the Perceptions and Practicalities Approach (PAPA) framework. Interviews were conducted in UK GP practices in 2013 and 2014; online posts were written by UK stroke survivors and family members taking part in the online forum of the Stroke Association between 2004 and 2011. 42 interview participants: 28 stroke survivors (age range 61-92 years) and 14 caregivers (85% spouses). 84 online forum participants: 49 stroke survivors (age range 32-72 years) and 33 caregivers (60% sons/daughters). 10 attributes were identified within the two data sources and categorised under three domains (context, mechanisms and outcomes). Participants' characteristics of forum users were often missing. Most forum participants had experienced a stroke within the previous 12 months, while interviewees had done so 1-5 years previously.All interview themes could be matched with corresponding themes from the forum. The forum yielded three additional themes: influence of bad press on taking statins, criticisms of clinicians' prescribing practices and caregiver burden in assisting with medications and being advocates for survivors with healthcare professionals. An online forum is an appropriate source of data for qualitative research on patients' and caregivers' issues with adherence to secondary prevention stroke medications and may offer additional insights compared with interviews, which can be attributed to differences in the approach to data collection. © 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.
Jamison, James; Sutton, Stephen; Mant, Jonathan; De Simoni, Anna
Objective To determine the appropriateness of an online forum compared with face-to-face interviews as a source of data for qualitative research on adherence to secondary prevention medications after stroke. Design A comparison of attributes of two data sources, interviews and a forum, using realistic evaluation; a comparison of themes around adherence according to the Perceptions and Practicalities Approach (PAPA) framework. Setting Interviews were conducted in UK GP practices in 2013 and 2014; online posts were written by UK stroke survivors and family members taking part in the online forum of the Stroke Association between 2004 and 2011. Participants 42 interview participants: 28 stroke survivors (age range 61–92 years) and 14 caregivers (85% spouses). 84 online forum participants: 49 stroke survivors (age range 32–72 years) and 33 caregivers (60% sons/daughters). Results 10 attributes were identified within the two data sources and categorised under three domains (context, mechanisms and outcomes). Participants’ characteristics of forum users were often missing. Most forum participants had experienced a stroke within the previous 12 months, while interviewees had done so 1–5 years previously. All interview themes could be matched with corresponding themes from the forum. The forum yielded three additional themes: influence of bad press on taking statins, criticisms of clinicians’ prescribing practices and caregiver burden in assisting with medications and being advocates for survivors with healthcare professionals. Conclusions An online forum is an appropriate source of data for qualitative research on patients’ and caregivers’ issues with adherence to secondary prevention stroke medications and may offer additional insights compared with interviews, which can be attributed to differences in the approach to data collection. PMID:29602848
Frederiksen, Julie Elisabeth Nordgaard; Sass, Louis A; Parnas, Josef
interview. We address the ontological status of pathological experience, the notions of symptom, sign, prototype and Gestalt, and the necessary second-person processes which are involved in converting the patient's experience (originally lived in the first-person perspective) into an "objective" (third......There is a glaring gap in the psychiatric literature concerning the nature of psychiatric symptoms and signs, and a corresponding lack of epistemological discussion of psycho-diagnostic interviewing. Contemporary clinical neuroscience heavily relies on the use of fully structured interviews...... person), actionable format, used for classification, treatment, and research. Our central thesis is that psychiatry targets the phenomena of consciousness, which, unlike somatic symptoms and signs, cannot be grasped on the analogy with material thing-like objects. We claim that in order to perform...
Jernej Amon Prodnik
Full Text Available The paper presents an interview with Janet Wasko, who is Professor and Knight Chair in Communication Research at the University of Oregon’s School of Journalism and Communication, and is widely considered as a key author working in the tradition of the political economy of communication. Currently, she is serving as President of the International Association for Media and Communication Research (IAMCR, one of the key international associations in the field of media and communication studies. Professor Wasko published several influential books on the film industry, especially on Hollywood and the Disney Corporation. The interview is especially focused on the influences on her approach, her position in the IAMCR, her understanding of how the cultural and media industries work, the political economy approach in media and communication studies, and the issues related to the film industry which she mostly tackles in her own research.
Brainard, Julii Suzanne; Al Assaf, Enana; Omasete, Judith; Leach, Steve; Hammer, Charlotte C; Hunter, Paul R
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
Lavis, John N; Oxman, Andrew D; Moynihan, Ray; Paulsen, Elizabeth J
Only a small number of previous efforts to describe the experiences of organizations that produce clinical practice guidelines (CPGs), undertake health technology assessments (HTAs), or directly support the use of research evidence in developing health policy (i.e., government support units, or GSUs) have relied on interviews and then only with HTA agencies. Interviews offer the potential for capturing experiences in great depth, particularly the experiences of organizations that may be under-represented in surveys. We purposively sampled organizations from among those who completed a questionnaire in the first phase of our three-phase study, developed and piloted a semi-structured interview guide, and conducted the interviews by telephone, audio-taped them, and took notes simultaneously. Binary or categorical responses to more structured questions were counted when possible. Themes were identified from among responses to semi-structured questions using a constant comparative method of analysis. Illustrative quotations were identified to supplement the narrative description of the themes. We interviewed the director (or his or her nominee) in 25 organizations, of which 12 were GSUs. Using rigorous methods that are systematic and transparent (sometimes shortened to 'being evidence-based') was the most commonly cited strength among all organizations. GSUs more consistently described their close links with policymakers as a strength, whereas organizations producing CPGs, HTAs, or both had conflicting viewpoints about such close links. With few exceptions, all types of organizations tended to focus largely on weaknesses in implementation, rather than strengths. The advice offered to those trying to establish similar organizations include: 1) collaborate with other organizations; 2) establish strong links with policymakers and stakeholders; 3) be independent and manage conflicts of interest; 4) build capacity; 5) use good methods and be transparent; 6) start small and
The purpose of this study is to assess issues that arise in the context of epistemological claims in narrative educational research by means of narrative analysis and epistemological evaluation. The research questions which guided the study were: 1) To what extent is epistemology considered by narrative educational researchers?; 2) What issues do…
Steven Hou, Ph.D., senior investigator in the Basic Research Laboratory at the Center for Cancer Research describes his latest research that has uncovered potential ways to eliminate cancer stem cells and may offer hope to patients with reoccurring tumors. Learn more...
Lowenstein, Daniel H
Daniel H Lowenstein, MD, is the Robert B and Ellinor Aird Professor and Vice-Chairman of Neurology, Director of the Epilepsy Center, and Director of Physician-Scientist Education and Training at the University of California, San Francisco (UCSF). He received his BA in Mathematics from the University of Colorado and MD from Harvard Medical School. He completed his neurology residency training at UCSF. Dr Lowenstein is a clinician-scientist who has studied both basic science and clinical aspects of epilepsy. In recent years, he has been an organizer of a large-scale, international effort to study the complex genetics of epilepsy, known as the Epilepsy Phenome/Genome Project. He has been actively involved in advancing the cause of epilepsy at the national and international level. Dr Lowenstein served as President of the American Epilepsy Society from 2003 to 2004 and the National Institute of Neurological Diseases and Stroke (NINDS) Advisory Council from 2000 to 2004, and has overseen the development of the NINDS Epilepsy Research Benchmarks since their inception in 2000.
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
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.
Oct 7, 2010 ... ... ability to produce goods and services that can compete in the global market. ... of doing business, industry clusters, and the environmental component. ... It has expanded throughout the country, so that today the research ...
Dr. Philip Stone is the executive director of the Institute for Dark Tourism Research. Founded in 2012 and based at the University of Central Lancashire (UCLan), England, the iDTR largely contributes to scientific research on Dark Tourism while offering guidance to industry practitioners and collaborating with the media. In 2009, along with his colleague Richard Sharpley, Philip Stone published The Darker Side of Travel: The Theory and Practice of Dark Tourism. This book has become one of the...
Rojon, C; Saunders, M.N.K.; McDowall, Almuth
In this chapter, we consider a specific example of applying mixed methods designs combining both qualitative and quantitative data collection and analysis approaches, giving particular attention to issues including reliability and validity. Human resource management (HRM) researchers, like others setting out to examine a novel or insufficiently defined research topic, frequently favour qualitative approaches to gather data during initial stages, to facilitate an in-depth exploration of indivi...
Forbat, Liz; Hubbard, Gill
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.
Finley, G Allen
G Allen Finley talks to Roshaine Gunawardana, Commissioning Editor: Dr Allen Finley is a pediatric anesthesiologist who has worked for over 20 years in pain research and management. He is Professor of Anesthesia and Psychology at Dalhousie University (NS, Canada), and holds the inaugural Dr Stewart Wenning Chair in Pediatric Pain Management at the IWK Health Centre in Halifax. He has published over 100 papers in peer-reviewed journals and has lectured widely, with more than 230 invited presentations on six continents. He started the PEDIATRIC-PAIN e-mail discussion list in 1993, bringing together pain researchers and clinicians from over 40 countries. His own research and educational projects have recently taken him to Jordan, Thailand, China, Brazil and elsewhere. His main interest is pain service development and advocacy for improved pain care for children around the world, and he is co-leader of the ChildKind International Initiative.
Ross, Joseph S
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.
Lynch, Jonathan; Mannion, Greg
Place-based and place-responsive approaches to outdoor learning and education are developing in many countries but there is dearth of theoretically-supported methodologies to take a more explicit account of place in research in these areas. In response, this article outlines one theoretical framing for place-responsive methodologies for…
Full Text Available Russell James is a professor and the CH Foundation Chair in Personal Financial Planning in the Department of Personal Financial Planning at Texas Tech University, where he is also the Director of Graduate Studies in Charitable Financial Planning. His research is focused on encouraging generosity and satisfaction in financial decision-making.
Brodin, Jane; Millde, Kristina
The report describes three preschool Swedish children with osteogenesis imperfecta (brittle bones) and the psychosocial support families require from society. Introductory sections explain the condition, review international research on brittle bones, consider the life situation of children with brittle bones, and examine societal support for…
Full Text Available John E. Grable, Ph.D., CFP(R teaches and conducts research in the Certified Financial Planner(TM Board of Standards undergraduate and graduate programs at the University of Georgia. Prior to entering the academic profession, he worked as a pension/benefits administrator and later as a Registered Investment Advisor in an asset management firm. He served as the founding editor for the Journal of Personal Finance and as the co-founding editor of the Journal of Financial Therapy. His research interests include financial risk-tolerance assessment, psychophysiological economics, and financial planning help-seeking behavior. Dr. Grable has published nearly 100 peer-reviewed papers, co-authored two financial planning textbooks, and co-edited a financial planning and counseling scales book. He currently writes a quarterly column for the Journal of Financial Service Professionals, serves as academic consultant to the Journal of Financial Planning, and chair the CFP Board Council on Education.
Virginia Solis Zuiker
Full Text Available Virginia Solis Zuiker is an Associate Professor in the Department of Family Social Science at the University of Minnesota. She teaches courses on personal and family finance, family financial counseling, family resource management, economic perspectives of families, and family decision-making. Her scholarly research focus is in the area of economic well-being of families with particular interest in self-employment and family-owned businesses. Her research focuses on the Hispanic family life and she is the author of “Hispanic Self-Employment in the Southwest: Rising Above the Threshold of Poverty,” (Garland Publishing, 1997. She received her B.S. from the University of North Texas, an M.S. from Texas Tech University, and a Ph.D. from The Ohio State University. She served three years on the Board of Directors for the Association of Financial Counseling and Planning Education.
Full Text Available The upheavals of 2011 and subsequent developments in the MENA region have had substantial effects on universities and research centers within Arab world and in other neighboring countries where similar developments are taking shape (security issues, stricter political control/lesser levels of political control and repression, changing levels of funding, changing focus of donors etc.. META had the opportunity to talk with American University of Beirut’s Prof. Sari Hanafi about the repercussions of these developments for scholarly work within the MENA region. Sari Hanafi is currently a Professor of Sociology and chair of the department of sociology, anthropology and media studies at the American University of Beirut. He is also the editor of Idafat: the Arab Journal of Sociology (Arabic. He is the Vice President of the International Sociological Association (ISA and Vice President of the board of the Arab Council of Social Science. He is the author of numerous journal articles and book chapters on the political and economic sociology of the Palestinian diaspora and refugees; sociology of migration; transnationalism; politics of scientific research; civil society and elite formation and transitional justice. His last book is Arab Research and Knowledge Society: New Critical Perspective (with R. Arvanitis (in Arabic, Beirut: CAUS and forthcoming in English with Routledge.
The Structured Interview & Scoring Tool-Massachusetts Alzheimer's Disease Research Center (SIST-M): development, reliability, and cross-sectional validation of a brief structured clinical dementia rating interview.
Okereke, Olivia I; Copeland, Maura; Hyman, Bradley T; Wanggaard, Taylor; Albert, Marilyn S; Blacker, Deborah
The Clinical Dementia Rating (CDR) and CDR Sum-of-Boxes can be used to grade mild but clinically important cognitive symptoms of Alzheimer disease. However, sensitive clinical interview formats are lengthy. To develop a brief instrument for obtaining CDR scores and to assess its reliability and cross-sectional validity. Using legacy data from expanded interviews conducted among 347 community-dwelling older adults in a longitudinal study, we identified 60 questions (from a possible 131) about cognitive functioning in daily life using clinical judgment, inter-item correlations, and principal components analysis. Items were selected in 1 cohort (n=147), and a computer algorithm for generating CDR scores was developed in this same cohort and re-run in a replication cohort (n=200) to evaluate how well the 60 items retained information from the original 131 items. Short interviews based on the 60 items were then administered to 50 consecutively recruited older individuals, with no symptoms or mild cognitive symptoms, at an Alzheimer's Disease Research Center. Clinical Dementia Rating scores based on short interviews were compared with those from independent long interviews. In the replication cohort, agreement between short and long CDR interviews ranged from κ=0.65 to 0.79, with κ=0.76 for Memory, κ=0.77 for global CDR, and intraclass correlation coefficient for CDR Sum-of-Boxes=0.89. In the cross-sectional validation, short interview scores were slightly lower than those from long interviews, but good agreement was observed for global CDR and Memory (κ≥0.70) as well as for CDR Sum-of-Boxes (intraclass correlation coefficient=0.73). The Structured Interview & Scoring Tool-Massachusetts Alzheimer's Disease Research Center is a brief, reliable, and sensitive instrument for obtaining CDR scores in persons with symptoms along the spectrum of mild cognitive change.
Hagaman, Ashley K.; Wutich, Amber
There is much debate over the number of interviews needed to reach data saturation for themes and metathemes in qualitative research. The primary purpose of this study is to determine the number of interviews needed to reach data saturation for metathemes in multisited and cross-cultural research. The analysis is based on a cross-cultural study on…
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 ...
Full Text Available In our current research project, we study how experiences such as hearing the voice of the Lord or having a vision of Virgin Mary are dealt with in psychiatry and Catholic pastoral practice. How is the status of these phenomena negotiated by the participants? Under what conditions do they become instances of legitimate religious experience or, alternatively, symptoms of mental illness? We approach the study of these issues "symmetrically"—we do not prefer a priori medical or spiritual explanations. Some time ago, we demonstrated and explained such an approach (which is common, e.g., in contemporary sociology of science, and its relevance for our research, in an analytic paper on the movie "The Exorcism of Emily Rose" (released in 2005. The paper discusses a highly ambiguous relationship, pictured in the film, between medical and spiritual interpretation of the story of a young girl who was considered possessed by demons and who died after unsuccessful exorcism (KONOPÁSEK & PALEČEK, 2006. The question that has inspired this paper is: can such a symmetrical approach be of any relevance also for people we are studying? In an attempt to get an answer, we have interviewed four Catholic priests on this particular issue. The priests had been asked to watch the movie on Emily Rose and read our paper on it in preparation for the interview. Based on the subsequent discussions (and also on some other empirical data of our current research, we wanted to shed some light on whether and in what ways our specific epistemic perspective coheres with the views and positions of our respondents. It turned out that this reflexive research experiment not only helped to clarify points of mis/understanding between us and our respondents, but also contributed to our own appreciation of the role of symmetry in our current research project as well as in the studied social practice. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1101129
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...
This article contributes to the rethinking of qualitative interview research into intercultural issues. It suggests that the application of poststructuralist thought should not be limited to the analysis of the interview material itself, but incorporate the choice of interviewees and the modalities...... for the accomplishment of interviews. The paper focuses on a discussion of theoretical and methodological considerations of design, approach and research strategy. These discussions are specified in relation to a project on gender and ethnicity in cultural encounters at Universities. In the paper, I introduce a research...... design named Cultural interviewing, present an approach to the design of interviews named Interview without a subject, and offer an analytic strategy directed towards the analysis of interview transcripts named Interview on the level of the signifier. The paper concludes that even though it is relevant...
Dr. Porter-O'Grady has written over 125 articles and book chapters and has published eight books and is completing a ninth. He has consulted with over 500 institutions and has spoken in 1300 settings in the U.S., Canada, Europe, and Asia and logs about 350,000 miles a year. Dr. Porter-O'Grady is listed in six different categories of Who's Who in America, serves on 7 editorial boards, and is a member of the New York Academy of Sciences and a Fellow in the American Academy of Nursing. He has served on a number of community boards and has been an elected officer in a variety of health related agencies and organizations. He is currently a health systems expert for the National Health Policy Council and is a member of the Georgia Health Care Reform Project. In this interview, which took place in Atlanta by ANNA Past President Gail Wick, Dr. Porter-O'Grady shares his wealth of knowledge and experience by challenging us to move beyond the old thinking of caring for a specific patient population to managing lives on a continuum of care in an interdependent relationship with other providers, to refine the term "patient care," letting go of the medical sickness model and returning to our life-centered, health-oriented nursing roots and to broaden our educational preparation to a systems perspective and a continuum of caring.
Davis, Dena S
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.
Chappuy, Hélène; Doz, François; Blanche, Stéphane; Gentet, Jean-Claude; Tréluyer, Jean-Marc
To examine the level of children's understanding of informed consent in clinical trials and factors that may influence these processes. Twenty nine children who were included in clinical trials for treatment of cancer or HIV, were offered the possibility to complete a semidirective interview, with parental permission. Children's understanding was measured by a score of 0-9 including items required to obtain a valid consent according to French and European legislations. Children were 8.5-18 years old (13.6 +/- 2.8 years). The higher percentage of understanding was obtained for the study objectives (n = 18, 62%), the risks (n = 17, 58%), the potential self-benefits (n = 18, 62%) and the potential benefits to other children (n = 17, 58%). The lower percentage of understanding was obtained for the procedures (n = 5, 17%), the possibility of alternative treatments (n = 9, 31%), the duration of participation (n = 6, 21%), their right to withdraw (n = 6, 21%), and the voluntary participation (n = 6, 21%). Sixteen children (55%) thought that the given information was adequate. Understanding was significantly correlated with child's age (r = 0.65; P = 0.0001) and the mean score was higher in patients over 14 years old compared to patients under the age of 14 (4.4 +/- 2.4, n = 14 vs. 2.6 +/- 2.6, n = 15, P consent was sought some time after the diagnosis (>7 days) rather than at the same time (consent forms. Understanding is related to age and timing of informed consent. (c) 2008 Wiley-Liss, Inc.
Planojević, Nina; Zivojinović, Dragica
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.
Dai, Zheng; Ómarsson, Ólafur
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...
Hambrick, Erin P.; O’Connor, Bridget M.; Vernberg, Eric M.
Objective Research suggests that some types of trauma research can be conducted safely with children ages 10 and older. The aim of this project was to learn more about potential risks or benefits of conducting research with younger children or with child disaster survivors, specifically about research that includes children providing trauma recollections. Method Fifty 8- to 12-year-old children who experienced a devastating tornado participated in an in-person interview that included both individual and joint (mother-child) recollections of their tornado experiences one year following exposure. These 50 children also rated three emotions at three timepoints and rated their perceptions (e.g., benefit and regret) of research post-participation. Children (N = 28) also participated in phone surveys three months later to assess persistent participation-related emotions and perceptions. Results Child reported emotions worsened from pre- to during participation; however, reports of emotions returned to pre-participation levels post-participation and remained so at the 3-month follow-up. Sixty-four percent of children reported at least some participation benefit and no participation regret immediately post-participation, as did 89.3% at the 3-month follow-up. Four percent of children reported some participation regret (no benefit) post-participation, and 0% three months later. No children requested to stop participating, and none required post-research connection with crisis services. Posttraumatic stress symptom severity, tornado exposure, and age were largely unrelated to child-reported emotions and perceptions of research. Conclusions Results indicate that carefully planned and executed disaster-related research that includes children providing recollections research can be conducted with preadolescents with little risk and some benefit. PMID:26390107
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...
Manion, Frank J; Robbins, Robert J; Weems, William A; Crowley, Rebecca S
Data protection is important for all information systems that deal with human-subjects data. Grid-based systems--such as the cancer Biomedical Informatics Grid (caBIG)--seek to develop new mechanisms to facilitate real-time federation of cancer-relevant data sources, including sources protected under a variety of regulatory laws, such as HIPAA and 21CFR11. These systems embody new models for data sharing, and hence pose new challenges to the regulatory community, and to those who would develop or adopt them. These challenges must be understood by both systems developers and system adopters. In this paper, we describe our work collecting policy statements, expectations, and requirements from regulatory decision makers at academic cancer centers in the United States. We use these statements to examine fundamental assumptions regarding data sharing using data federations and grid computing. An interview-based study of key stakeholders from a sample of US cancer centers. Interviews were structured, and used an instrument that was developed for the purpose of this study. The instrument included a set of problem scenarios--difficult policy situations that were derived during a full-day discussion of potentially problematic issues by a set of project participants with diverse expertise. Each problem scenario included a set of open-ended questions that were designed to elucidate stakeholder opinions and concerns. Interviews were transcribed verbatim and used for both qualitative and quantitative analysis. For quantitative analysis, data was aggregated at the individual or institutional unit of analysis, depending on the specific interview question. Thirty-one (31) individuals at six cancer centers were contacted to participate. Twenty-four out of thirty-one (24/31) individuals responded to our request- yielding a total response rate of 77%. Respondents included IRB directors and policy-makers, privacy and security officers, directors of offices of research, information
Weems William A
security officers, directors of offices of research, information security officers and university legal counsel. Nineteen total interviews were conducted over a period of 16 weeks. Respondents provided answers for all four scenarios (a total of 87 questions. Results were grouped by broad themes, including among others: governance, legal and financial issues, partnership agreements, de-identification, institutional technical infrastructure for security and privacy protection, training, risk management, auditing, IRB issues, and patient/subject consent. Conclusion The findings suggest that with additional work, large scale federated sharing of data within a regulated environment is possible. A key challenge is developing suitable models for authentication and authorization practices within a federated environment. Authentication – the recognition and validation of a person's identity – is in fact a global property of such systems, while authorization – the permission to access data or resources – mimics data sharing agreements in being best served at a local level. Nine specific recommendations result from the work and are discussed in detail. These include: (1 the necessity to construct separate legal or corporate entities for governance of federated sharing initiatives on this scale; (2 consensus on the treatment of foreign and commercial partnerships; (3 the development of risk models and risk management processes; (4 development of technical infrastructure to support the credentialing process associated with research including human subjects; (5 exploring the feasibility of developing large-scale, federated honest broker approaches; (6 the development of suitable, federated identity provisioning processes to support federated authentication and authorization; (7 community development of requisite HIPAA and research ethics training modules by federation members; (8 the recognition of the need for central auditing requirements and authority, and; (9 use of two
offices of research, information security officers and university legal counsel. Nineteen total interviews were conducted over a period of 16 weeks. Respondents provided answers for all four scenarios (a total of 87 questions). Results were grouped by broad themes, including among others: governance, legal and financial issues, partnership agreements, de-identification, institutional technical infrastructure for security and privacy protection, training, risk management, auditing, IRB issues, and patient/subject consent. Conclusion The findings suggest that with additional work, large scale federated sharing of data within a regulated environment is possible. A key challenge is developing suitable models for authentication and authorization practices within a federated environment. Authentication – the recognition and validation of a person's identity – is in fact a global property of such systems, while authorization – the permission to access data or resources – mimics data sharing agreements in being best served at a local level. Nine specific recommendations result from the work and are discussed in detail. These include: (1) the necessity to construct separate legal or corporate entities for governance of federated sharing initiatives on this scale; (2) consensus on the treatment of foreign and commercial partnerships; (3) the development of risk models and risk management processes; (4) development of technical infrastructure to support the credentialing process associated with research including human subjects; (5) exploring the feasibility of developing large-scale, federated honest broker approaches; (6) the development of suitable, federated identity provisioning processes to support federated authentication and authorization; (7) community development of requisite HIPAA and research ethics training modules by federation members; (8) the recognition of the need for central auditing requirements and authority, and; (9) use of two-protocol data exchange
Full Text Available My main purpose in this paper is to illustrate how participants in a research interview occasioned conversation make use of two important discursive devices, namely: small stories and interpretative repertoires for positioning during interaction in order to foster certain situated identity claims. The premises I work with in this paper are that identity is a practiced situated accomplishment, that small stories are devices employed frequently for identity work that are no less important than extended autobiographical expositions, and that interpretative repertoires are practiced ways of speaking that allow participants to manage their positions in certain ways. Moreover, I will try to show that positioning by means of small stories and interpretative repertoires should be understood in direct relation with the identities and other membership categories made relevant by the interviewer. When participants’ positions are conflicting or miss-aligned, a more pronounced identity work is employed on the part of the interviewee, sustained by certain repertoires’ management strategies: alternation, nuancing, or rejecting certain repertoires.
Jao, Irene; Kombe, Francis; Mwalukore, Salim; Bull, Susan; Parker, Michael; Kamuya, Dorcas; Molyneux, Sassy
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
Al-Amer, Rasmieh; Ramjan, Lucie; Glew, Paul; Darwish, Maram; Salamonson, Yenna
To illuminate translation practice in cross-language interview in health care research and its impact on the construction of the data. Globalisation and changing patterns of migration have created changes to the world's demography; this has presented challenges for overarching social domains, specifically, in the health sector. Providing ethno-cultural health services is a timely and central facet in an ever-increasingly diverse world. Nursing and other health sectors employ cross-language research to provide knowledge and understanding of the needs of minority groups, which underpins cultural-sensitive care services. However, when cultural and linguistic differences exist, they pose unique complexities for cross-cultural health care research; particularly in qualitative research where narrative data are central for communication as most participants prefer to tell their story in their native language. Consequently, translation is often unavoidable in order to make a respondent's narrative vivid and comprehensible, yet, there is no consensus about how researchers should address this vital issue. An integrative literature review. PubMed and CINAHL databases were searched for relevant studies published before January 2014, and hand searched reference lists of studies were selected. This review of cross-language health care studies highlighted three major themes, which identify factors often reported to affect the translation and production of data in cross-language research: (1) translation style; (2) translators; and (3) trustworthiness of the data. A plan detailing the translation process and analysis of health care data must be determined from the study outset to ensure credibility is maintained. A transparent and systematic approach in reporting the translation process not only enhances the integrity of the findings but also provides overall rigour and auditability. It is important that minority groups have a voice in health care research which, if accurately
MacLennan, Steven; Bekema, Hendrika J; Williamson, Paula R; Campbell, Marion K; Stewart, Fiona; MacLennan, Sara J; N'Dow, James M O; Lam, Thomas B L
Prostate cancer is a growing health problem worldwide. The management of localised prostate cancer is controversial. It is unclear which of several surgical, radiotherapeutic, ablative, and surveillance treatments is the most effective. All have cost, process and recovery, and morbidity implications which add to treatment decision-making complexity for patients and healthcare professionals. Evidence from randomised controlled trials (RCTs) is not optimal because of uncertainty as to what constitutes important outcomes. Another issue hampering evidence synthesis is heterogeneity of outcome definition, measurement, and reporting. This project aims to determine which outcomes are the most important to patients and healthcare professionals, and use these findings to recommend a standardised core outcome set for comparative effectiveness trials of treatments for localised prostate cancer, to optimise decision-making. The range of potentially important outcomes and measures will be identified through systematic reviews of the literature and semi-structured interviews with patients. A consultation exercise involving representatives from two key stakeholder groups (patients and healthcare professionals) will ratify the list of outcomes to be entered into a three round Delphi study. The Delphi process will refine and prioritise the list of identified outcomes. A methodological substudy (nested RCT design) will also be undertaken. Participants will be randomised after round one of the Delphi study to one of three feedback groups, based on different feedback strategies, in order to explore the potential impact of feedback strategies on participant responses. This may assist the design of a future core outcome set and Delphi studies. Following the Delphi study, a final consensus meeting attended by representatives from both stakeholder groups will determine the final recommended core outcome set. This study will inform clinical practice and future trials of interventions of
Lumb, Andrew B; Homer, Matthew; Miller, Amy
Research indicates that some social groups are disadvantaged by medical school selection systems. The stage(s) of a selection process at which this occurs is unknown, but at interview, when applicant and interviewer are face-to-face, there is potential for social bias to occur. We performed a detailed audit of the interview process for a single-entry year to a large UK medical school. Our audit included investigating the personal characteristics of both interviewees and interviewers to find out whether any of these factors, including the degree of social matching between individual pairs of interviewees and interviewers, influenced the interview scores awarded. A total of 320 interviewers interviewed 734 applicants, providing complete data for 2007 interviewer-interviewee interactions. The reliability of the interview process was estimated using generalisability theory at 0.82-0.87. For both interviewers and interviewees, gender, ethnic background, socio-economic group and type of school attended had no influence on the interview scores awarded or achieved. Staff and student interviewer marks did not differ significantly. Although numbers in each group of staff interviewers were too small for formal statistical analysis, there were no obvious differences in marks awarded between different medical specialties or between interviewers with varying amounts of interviewing experience. Our data provide reassurance that the interview does not seem to be the stage of selection at which some social groups are disadvantaged. These results support the continued involvement of senior medical students in the interview process. Despite the lack of evidence that an interview is useful for predicting future academic or clinical success, most medical schools continue to use interviews as a fundamental component of their selection process. Our study has shown that at least this arguably misplaced reliance upon interviewing is not introducing further social bias into the selection
Full Text Available In this article the authors discuss the usefulness of focus groups for researching sensitive issues using evidence from a study examining the experiences of nurses providing care in the context of the Northern Ireland Troubles. They conducted three group interviews with nurses during which they asked about the issues the nurses face(d in providing nursing care amid enduring social division. Through a discursive analysis of within-group interaction, they demonstrate how participants employ a range of interpretive resources, the effect of which is to prioritize particular knowledge concerning the nature of nursing care. The identification of such patterned activity highlights the ethnographic value of focus groups to reveal social conventions guiding the production of accounts but also suggests that accounts cannot be divorced from the circumstances of their production. Consequently, the authors argue that focus groups should be considered most useful for illuminating locally sanctioned ways of talking about sensitive issues.
An interview with Henry Jenkins focussing on Transformative Works and Cultures (TWC), the Organization for Transformative Works (OTW), and Jenkins' academic research into fan and participatory cultures.
Al Qaroot, Bashar S; Sobuh, Mohammad
Problem-based learning (where rather than feeding students the knowledge, they look for it themselves) has long been thought of as an ideal approach in teaching because it would encourage students to acquire knowledge from an undetermined medium of wrong and right answers. However, the effect of such approach in the learning experience of prosthetics and orthotics students has never been investigated. This study explores the implications of integrating problem-based learning into teaching on the students' learning experience via implementing a research-informed clinical practice module into the curriculum of last year prosthetics and orthotics undergraduate students at the University of Jordan (Amman, Jordan). Qualitative research pilot study. Grounded theory approach was used based on the data collected from interviewing a focus group of four students. Students have identified a number of arguments from their experience in the research-informed clinical practice where, generally speaking, students described research-informed clinical practice as a very good method of education. Integrating problem-based learning into teaching has many positive implications. In particular, students pointed out that their learning experience and clinical practice have much improved after the research-informed clinical practice. Findings from this investigation demonstrate that embedding problem-based learning into prosthetics and orthotics students' curriculum has the potential to enhance students' learning experience, particularly students' evidence-based practice. This may lead to graduates who are more knowledgeable and thus who can offer the optimal patient care (i.e. clinical practice). © The International Society for Prosthetics and Orthotics 2014.
Sparrow, E. B.; Kopplin, M.; Gazal, R. M.; Robin, J. H.; Boger, R. A.
Phenology plays a key role in the environment and ecosystem. Primary and secondary students around the world have been collecting vegetation phenology data and contributing to ongoing scientific investigations. They have increased research capacity by increasing spatial coverage of ground observations that can be useful for validation of remotely sensed data. The green-up and green-down phenology measurement protocols developed at the University of Alaska Fairbanks (UAF) as part of the Global Learning and Observations to Benefit the Environment (GLOBE) program, have been used in more than 250 schools in over 20 countries. In addition to contributing their data, students have conducted their own investigations and presented them at science fairs and symposiums, and international conferences. An elementary school student in Alaska conducted a comprehensive study on the green-down rates of native and introduced trees and shrubs. Her project earned her a one-year college scholarship at UAF. Students from the Model Secondary School for the Deaf in Washington, D. C. and from the Indiana School for the Deaf collaborated on a comparative green-up study, and were chosen to present at an international conference where students from more than 20 countries participated. Similarly, students in Thailand presented at national conferences, their studies such as "The Relationship between Environmental Conditions and Green-down of Teak Trees (Tectona grandis L.)" at Roong Aroon School, Bangkok and "The Comparison of Budburst and Green-up of Leab Trees (Ficus infectoria Roxb.) at Rob Wiang and Mae Khao Tom Sub-district in Chiang Rai Province". Some challenges in engaging students in phenological studies include the mismatch in timing of the start and end of the plant growing season with that of the school year in northern latitudes and the need for scientists and teachers to work with students to ensure accurate measurements. However these are outweighed by benefits to the scientists
Tunnecliff, Jacqueline; Ilic, Dragan; Morgan, Prue; Keating, Jennifer; Gaida, James E; Clearihan, Lynette; Sadasivan, Sivalal; Davies, David; Ganesh, Shankar; Mohanty, Patitapaban; Weiner, John; Reynolds, John; Maloney, Stephen
Establishing and promoting connections between health researchers and health professional clinicians may help translate research evidence to clinical practice. Social media may have the capacity to enhance these connections. The aim of this study was to explore health researchers' and clinicians' current use of social media and their beliefs and attitudes towards the use of social media for communicating research evidence. This study used a mixed-methods approach to obtain qualitative and quantitative data. Participation was open to health researchers and clinicians. Data regarding demographic details, current use of social media, and beliefs and attitudes towards the use of social media for professional purposes were obtained through an anonymous Web-based survey. The survey was distributed via email to research centers, educational and clinical institutions, and health professional associations in Australia, India, and Malaysia. Consenting participants were stratified by country and role and selected at random for semistructured telephone interviews to explore themes arising from the survey. A total of 856 participants completed the questionnaire with 125 participants declining to participate, resulting in a response rate of 87.3%. 69 interviews were conducted with participants from Australia, India, and Malaysia. Social media was used for recreation by 89.2% (749/840) of participants and for professional purposes by 80.0% (682/852) of participants. Significant associations were found between frequency of professional social media use and age, gender, country of residence, and graduate status. Over a quarter (26.9%, 229/852) of participants used social media for obtaining research evidence, and 15.0% (128/852) of participants used social media for disseminating research evidence. Most participants (95.9%, 810/845) felt there was a role for social media in disseminating or obtaining research evidence. Over half of the participants (449/842, 53.3%) felt they had a
Naldemirci, Öncel; Wolf, Axel; Elam, Mark; Lydahl, Doris; Moore, Lucy; Britten, Nicky
The introduction of innovative models of healthcare does not necessarily mean that they become embedded in everyday clinical practice. This study has two aims: first, to analyse deliberate and emergent strategies adopted by healthcare professionals to overcome barriers to normalization of a specific framework of person-centred care (PCC); and secondly, to explore how the recipients of PCC understand these strategies. This paper is based on a qualitative study of the implementation of PCC in a Swedish context. It draws on semi-structured interviews with 18 researchers and 17 practitioners who adopted a model of PCC on four different wards and 20 patients who were cared for in one of these wards. Data from these interviews were first coded inductively and emerging themes are analysed in relation to normalization process theory (NPT). In addition to deliberate strategies, we identify emergent strategies to normalize PCC by (i) creating and sustaining coherence in small but continuously communicating groups (ii) interpreting PCC flexibly when it meets specific local situations and (iii) enforcing teamwork between professional groups. These strategies resulted in patients perceiving PCC as bringing about (i) a sense of ease (ii) appreciation of inter-professional congruity (ii) non-hierarchical communication. NPT is useful to identify and analyse deliberate and emergent strategies relating to mechanisms of normalization. Emergent strategies should be interpreted not as trivial solutions to problems in implementation, but as a possible repertoire of tools, practices and skills developed in situ. As professionals and patients may have different understandings of implementation, it is also crucial to include patients' perceptions to evaluate outcomes.
Bailey, S; Boddy, K; Briscoe, S; Morris, C
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
Lippke, Lena; Tanggaard, Lene
In this paper we will present and discuss an example of an interview characterized by the researcher moving back and forth between two positions. On the one hand the formal position of being an interviewer/researcher using her prepared interview guide as a tool and on the other hand bringing...... in the position of a psychologist with past experiences within supervision and consultation/coaching. The framing of the interview was build around the theme “My role in keeping students out from dropping out of the Vocational Educational Training College.” We will discuss how both the interviewer...... and the interviewee might seduce each other to develop a conversation in which intersections between supervision/coaching and interviewing merge. The example clearly demonstrates how subjectivity influences the knowledge that is being produced in an interview situation, which should be recognized and reflected upon...
Quantitative research suggests that medical students' empathy declines during their training. This meta-ethnography asks: What new understanding may be gained by a synthesis of interview-based qualitative research on medical students' views and experiences of empathy? How can such a synthesis be undertaken? A meta-ethnography synthesizes individual qualitative studies to generate knowledge increasing understanding and informing debate. A literature search yielded eight qualitative studies which met the inclusion criteria. These were analyzed from a phenomenological and interpretative perspective. The meta-ethnography revealed a conceptual confusion around empathy and a tension in medical education between distancing and connecting with patients. Barriers to empathy included a lack of patient contact and a strong emphasis on the biomedical over the psycho-social aspects of the curriculum. A number of influences discussed in the paper lead students to adopt less overt ways of showing their empathy. These insights deepen our understanding of the apparent decline in empathy in medical students. The lessons from these studies suggest that future curriculum development should include earlier patient contact, more emphasis on psycho-social aspects of care and address the barriers to empathy to ensure that tomorrow's doctors are empathetic as well as competent.
Smith, T.; Moore, E. J.; Tunstall-Pedoe, H.
OBJECTIVE: To monitor the conduct of medical research projects that have already been approved by the local medical research ethics committee. DESIGN: Follow up study of ethically approved studies (randomly selected from all the studies approved in the previous year) by examination of patients' case notes, consent forms, and research records and by interview of the researchers at their workplace. SETTING: Tayside, Scotland (mixed rural and urban population). SUBJECTS: 30 research projects app...
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.
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
Mockford, Carole; Murray, Matt; Seers, Kate; Oyebode, Jan; Grant, Richard; Boex, Sue; Staniszewska, Sophie; Diment, Yvonne; Leach, Jim; Sharma, Uma; Clarke, Rosemary; Suleman, Rashida
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
Adriansen, Hanne Kirstine
in qualitative interviews. I first presented the paper on a conference on life history research at Karlstad University in November 2010. My main purpose was to establish whether a paper discussing the use of time line interviews should be placed in the context of a life history research. The valuable comments......My first encounter with life history research was during my Ph.D. research. This concerned a multi-method study of nomadic mobility in Senegal. One method stood out as yielding the most interesting and in-depth data: life story interviews using a time line. I made interviews with the head...... of the nomadic households and during these I came to understand the use of mobility in a complex context of continuity and change, identity and belonging in the Fulani community. Time line interviews became one of my favourite tool in the years to follow, a tool used both for my research in various settings...
Cacioppo, Cara N; Chandler, Ariel E; Towne, Meghan C; Beggs, Alan H; Holm, Ingrid A
Much information on parental perspectives on the return of individual research results (IRR) in pediatric genomic research is based on hypothetical rather than actual IRR. Our aim was to understand how the expected utility to parents who received IRR on their child from a genetic research study compared to the actual utility of the IRR received. We conducted individual telephone interviews with parents who received IRR on their child through participation in the Manton Center for Orphan Disease Research Gene Discovery Core (GDC) at Boston Children's Hospital (BCH). Five themes emerged around the utility that parents expected and actually received from IRR: predictability, management, family planning, finding answers, and helping science and/or families. Parents expressing negative or mixed emotions after IRR return were those who did not receive the utility they expected from the IRR. Conversely, parents who expressed positive emotions were those who received as much or greater utility than expected. Discrepancies between expected and actual utility of IRR affect the experiences of parents and families enrolled in genetic research studies. An informed consent process that fosters realistic expectations between researchers and participants may help to minimize any negative impact on parents and families.
Abma, T.A.; Pittens, C.A.C.M.; Visse, M.; Elberse, J.E.; Broerse, J.E.W.
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
Tijdink, J K; Schipper, K; Bouter, L M; Maclaine Pont, P; de Jonge, J; Smulders, Y M
To investigate the biomedical scientist's perception of the prevailing publication culture. Qualitative focus group interview study. Four university medical centres in the Netherlands. Three randomly selected groups of biomedical scientists (PhD, postdoctoral staff members and full professors). Main themes for discussion were selected by participants. Frequently perceived detrimental effects of contemporary publication culture were the strong focus on citation measures (like the Journal Impact Factor and the H-index), gift and ghost authorships and the order of authors, the peer review process, competition, the funding system and publication bias. These themes were generally associated with detrimental and undesirable effects on publication practices and on the validity of reported results. Furthermore, senior scientists tended to display a more cynical perception of the publication culture than their junior colleagues. However, even among the PhD students and the postdoctoral fellows, the sentiment was quite negative. Positive perceptions of specific features of contemporary scientific and publication culture were rare. Our findings suggest that the current publication culture leads to negative sentiments, counterproductive stress levels and, most importantly, to questionable research practices among junior and senior biomedical scientists. 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/
Traulsen, Janine Morgall; Almarsdóttir, Anna Birna; Björnsdóttir, Ingunn
There has been an upsurge of academic interest in using focus groups (FGs) as a main or stand-alone qualitative method. In this article, the authors introduce a recently developed ancillary method to FGs called interviewing the moderator. The method is employed immediately after an FG and consists...... of a one-on-one interview with the FG moderator by another member of the research team. The authors argue, with reference to a specific study, that interviewing the moderator adds a new and valuable dimension to group interviews used in research. They describe how this method came about and provide...
Full Text Available The first section of this interview addresses the political and cultural milieu that shaped Karol Modzelewski’s education (in Poland and Italy, too, the relations with both his mentor Aleksander Gieysztor and the historians of the previous generation, the condition of education in Poland especially in the ’60s, his political involvement, the selection of his research interests and the development the latter underwent. Then the interview examines Modzelewski’s relations with scholars belonging to other historiographical schools, with particular attention to the issue of ethnogenesis, the methodology concerning the structure of sources to reconstruct the history of the Barbarian world in the first millennium, the matter of the “Barbaric collectivism”, the reception of his study L’Europa dei barbari (‘The Europe of the Barbarians’, 2004, and finally how research is organized and evaluated in Poland. Quotable as Intervista a Karol Modzelewski, a cura di Paola Guglielmotti e Gian Maria Varanini, "Reti Medievali - Rivista", 11, 1 (2010, p. 509-579, url: .
Kyte, Derek; Ives, Jonathan; Draper, Heather; Keeley, Thomas; Calvert, Melanie
Patient-reported outcomes (PROs), such as health-related quality of life (HRQL) are increasingly used to evaluate treatment effectiveness in clinical trials, are valued by patients, and may inform important decisions in the clinical setting. It is of concern, therefore, that preliminary evidence, gained from group discussions at UK-wide Medical Research Council (MRC) quality of life training days, suggests there are inconsistent standards of HRQL data collection in trials and appropriate training and education is often lacking. Our objective was to investigate these reports, to determine if they represented isolated experiences, or were indicative of a potentially wider problem. We undertook a qualitative study, conducting 26 semi-structured interviews with research nurses, data managers, trial coordinators and research facilitators involved in the collection and entry of HRQL data in clinical trials, across one primary care NHS trust, two secondary care NHS trusts and two clinical trials units in the UK. We used conventional content analysis to analyze and interpret our data. Our study participants reported (1) inconsistent standards in HRQL measurement, both between, and within, trials, which appeared to risk the introduction of bias; (2), difficulties in dealing with HRQL data that raised concern for the well-being of the trial participant, which in some instances led to the delivery of non-protocol driven co-interventions, (3), a frequent lack of HRQL protocol content and appropriate training and education of trial staff, and (4) that HRQL data collection could be associated with emotional and/or ethical burden. Our findings suggest there are inconsistencies in the standards of HRQL data collection in some trials resulting from a general lack of HRQL-specific protocol content, training and education. These inconsistencies could lead to biased HRQL trial results. Future research should aim to develop HRQL guidelines and training programmes aimed at supporting
Karlsen, Kamilla; Humaidan, Peter; Sørensen, Lise H
This is a retrospective study to investigate whether motivational interviewing increases weight loss among obese or overweight women prior to fertility treatment. Women with body mass index (BMI) > 30 kg/m(2) approaching the Fertility Clinic, Regional Hospital Skive, were given advice about diet...... and physical activity with the purpose of weight loss. In addition, they were asked if they wanted to receive motivational interviewing. Among other data, age, height and weight were obtained. Main outcomes were weight loss measured in kg and decrease in BMI. We studied 187 women: 110 received sessions...... of motivational interviewing (intervention group, n = 110), 64 received motivational support by phone or e-mail only and 13 women did not wish any motivational support (control group, n = 77). The mean weight loss and decrease in BMI was greater in the intervention group compared with the control group (9.3 kg...
de Beer, Marie; Mason, Roger B.
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…
Rosenblatt, Paul C.
Illustrations from a recent study of farm families who had lost a family member are used to illuminate some of the ethical challenges in qualitative bereavement research. Included in the exploration are ethics involved in interview recruitment, causing pain, informed consent, the boundaries of research and therapy, family dysfunction, and…
... 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...
McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec
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
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
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.
Schilling, Imke; Gerhardus, Ansgar
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.
van Bekkum, Jennifer E; Fergie, Gillian M; Hilton, Shona
Public engagement (PE) has become a common feature of many liberal governmental agendas worldwide. Since the turn of this century there has been a succession of United Kingdom policy initiatives to encourage research funding agencies, universities and researchers to reconsider how they engage with citizens and communities. Although most funding agencies now explicitly promote PE within research, little empirical work has been carried out in this area. In this study, we explored why and how health and medical research funding agencies in the United Kingdom have interpreted and implemented their role to promote PE within research. Semi-structured interviews were carried out with 30 key informants from 10 agencies that fund health or medical research. Data were also gathered from agencies' websites and documentation. The analysis was based on the constant comparative method. Across agencies, we found that PE was being interpreted and operationalised in various different ways. The terminology used within funding agencies to describe PE seems to be flexibly applied. Disciplinary differences were evident both in the terminology used to describe PE and the drivers for PE highlighted by participants - with applied health science funders more aligned with participatory models of PE. Within the grant funding process PE was rarely systematically treated as a key component of research. In particular, PE was not routinely incorporated into the planning of funding calls. PE was more likely to be considered in the application and assessment phases, where it was largely appraised as a tool for enhancing science. Concerns were expressed regarding how to monitor and evaluate PE within research. This study suggests funding agencies working within specific areas of health and medicine can promote particular definitions of PE and aligned practices which determine the boundaries in which researchers working in these areas understand and practice PE. Our study also highlights how the
von Zerssen, D; Pössl, J; Hecht, H; Black, C; Garczynski, E; Barthelmes, H
The Biographical Personality Interview (BPI) is a research instrument for the retrospective assessment of premorbid personality traits of psychiatric patients. Its construction is based on results of a series of investigations in which biographical data from psychiatric case notes were analysed with respect to premorbid personality traits. In order to avoid methodological shortcomings of the utilisation of clinical records, an interview technique was developed. It is applied by two independent, specially trained investigators who are kept "blind" regarding any clinical data of the subject under study. One of them has to conduct the interview of a clinically remitted patient and to provide an interview protocol, the other one has to rate personality traits from that protocol along a large series of purely descriptive items. Sum scores for six personality structures ("types") are calculated and the case is then assigned to the intra-individually dominating personality type according to the highest of these scores.
Full Text Available Abstract Background Many studies of health outcomes rely on data collected by interviewers administering highly-structured (quantitative questionnaires to participants. Little appears to be known about the experiences of such interviewers. This paper explores interviewer experiences of working on a longitudinal study in New Zealand (the Prospective Outcomes of injury Study - POIS. Interviewers administer highly-structured questionnaires to participants, usually by telephone, and enter data into a secure computer program. The research team had expectations of interviewers including: consistent questionnaire administration, timeliness, proportions of potential participants recruited and an empathetic communication style. This paper presents results of a focus group to qualitatively explore with the team of interviewers their experiences, problems encountered, strategies, support systems used and training. Methods A focus group with interviewers involved in the POIS interviews was held; it was audio-recorded and transcribed. The analytical method was thematic, with output intended to be descriptive and interpretive. Results Nine interviewers participated in the focus group (average time in interviewer role was 31 months. Key themes were: 1 the positive aspects of the quantitative interviewer role (i.e. relationships and resilience, insights gained, and participants' feedback, 2 difficulties interviewers encountered and solutions identified (i.e. stories lost or incomplete, forgotten appointments, telling the stories, acknowledging distress, stories reflected and debriefing and support, and 3 meeting POIS researcher expectations (i.e. performance standards, time-keeping, dealing exclusively with the participant and maintaining privacy. Conclusions Interviewers demonstrated great skill in the way they negotiated research team expectations whilst managing the relationships with participants. Interviewers found it helpful to have a research protocol in
Ullman, Sarah E
This article describes the author's personal experiences of conducting a qualitative semistructured interview study, after having done predominantly quantitative survey research in the social sciences. The author describes the process of learning how to approach conducting semistructured interviews with female advocates and clinicians who provide services to sexual assault survivors in the community. The author describes making the transition from a logical positivist deductive approach to thinking about and conducting research to a more social constructionist stance in which one learns from participants about their experiences and perspectives in narrative form to discover knowledge and develop theory inductively.
Nisio, Sigeko; Uematsu, Eisui; Obayashi, Haruo
An interview record with SEKIGUCHI Tadashi, Professor Emeritus at The University of Tokyo, on the nuclear fusion researches in Japan later half of 1980's is given. The major topics concerned are: activities of Science Council of Japan, the establishment of the Japan Society of Plasma Science and Nuclear Fusion Research, the history of establishing National Institute for Fusion Science, and effects of Grant-in-Aid for Scientific Research, and others. (author)
Delin, Catherine R.
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…
Tuffrey-Wijne, Irene; Butler, Gary
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.
McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec
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...
Sivell, Stephanie; Prout, Hayley; Hopewell-Kelly, Noreen; Baillie, Jessica; Byrne, Anthony; Edwards, Michelle; Harrop, Emily; Noble, Simon; Sampson, Catherine; Nelson, Annmarie
To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care. Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment. The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life. The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis. 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/
Full Text Available An interview with Henry Jenkins focussing on Transformative Works and Cultures (TWC, the Organization for Transformative Works (OTW, and Jenkins' academic research into fan and participatory cultures.
Shea, Shawn Christopher
Over the past several decades, exciting advances have been made in the art and science of teaching clinical interviewing, which are supported by an ever-growing evidence base documenting their effectiveness. In this second article in a 2-part series, the training and research implications of an innovative approach to improving medication adherence based on these educational advances--the medication interest model (MIM)--are described. The objective is to provide an "insider's view" of how to creatively teach the MIM to case managers, as well as design state-of-the-art courses and research platforms dedicated to improving medication adherence through improved clinical interviewing skills in both nursing and medical student education. The teaching and research design concepts are applicable to all primary care settings as well as specialty areas from endocrinology and cardiology to psychiatry. Evidence-based advances in the teaching of clinical interviewing skills such as response-mode research, facilic supervision, microtraining, and macrotraining lend a distinctive quality and integrative power to the MIM. The model delineates several new platforms for training and research regarding the enhancement of medication adherence including an approach for collecting individual interviewing techniques into manageable "learning modules" amenable to competency evaluation and potential certification.
Evang, Are; Øverlien, Carolina
The aim of this article is to investigate the competence of young children staying with their mothers in refuges for abused women as participants in qualitative interviews. Discourse of the verbal and non-verbal actions of seven young children (4-7 years old) was analysed using a theory originally developed to describe infant-mother interaction as…
Kongsholm, Nana Cecilie Halmsted; Lassen, Jesper; Sandøe, Peter
Individual, comprehensive, and written informed consent is broadly considered an ethical obligation in research involving the sampling of human material. In developing countries, however, local conditions, such as widespread illiteracy, low levels of education, and hierarchical social structures complicate compliance with these standards. As a result, researchers may modify the consent process to secure participation. To evaluate the ethical status of such modified consent strategies it is necessary to assess the extent to which local practices accord with the values underlying informed consent. Over a two-week period in April 2014 we conducted semi-structured interviews with researchers from a genetic research institute in rural Pakistan and families who had given blood samples for their research. Interviews with researchers focused on the institute's requirements for consent, and the researchers' strategies for and experiences with obtaining consent in the field. Interviews with donors focused on their motivation for donating samples, their experience of consent and donation, and what factors were central in their decisions to give consent. Researchers often reported modifications to consent procedures suited to the local context, standardly employing oral and elder consent, and tailoring information to the social education level of donor families. Central themes in donors' accounts of their decision to consent were the hope of getting something out of their participation and their remarkably high levels of trust in the researchers. Several donor accounts indicated a degree of confusion about participation and diagnosis, resulting in misconceived expectations of therapeutic benefits. We argue that while building and maintaining trusting relationships in research is important - not least in developing countries - strategies that serve this endeavor should be supplemented with efforts to ensure proper provision and understanding of relevant information
Roxanne K. Vandermause PhD, RN
Full Text Available This article describes, exemplifies and discusses the use of the philosophical hermeneutic interview and its distinguishing characteristics. Excerpts of interviews from a philosophical hermeneutic study are used to show how this particular phenomenological tradition is applied to research inquiry. The purpose of the article is to lay out the foundational background for philosophical hermeneutics in a way that clarifies its unique approach to interviewing and its usefulness for advancing health care knowledge. Implications for health care research and practice are addressed.
Vries, M.C. de; Wit, J.M.; Engberts, D.P.; Kaspers, G.J.L.; Leeuwen, E. van
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
... 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...
Elberse, J.E.; Pittens, C.A.C.M.; de Cock Buning, J.T.; Broerse, J.E.W.
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
Bell, Rick; Marshall, David W
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.
McAlearney, Ann Scheck; Walker, Daniel; Moss, Alexandra D; Bickell, Nina A
Qualitative comparative analysis (QCA) is a methodology created to address causal complexity in social sciences research by preserving the objectivity of quantitative data analysis without losing detail inherent in qualitative research. However, its use in health services research (HSR) is limited, and questions remain about its application in this context. To explore the strengths and weaknesses of using QCA for HSR. Using data from semistructured interviews conducted as part of a multiple case study about adjuvant treatment underuse among underserved breast cancer patients, findings were compared using qualitative approaches with and without QCA to identify strengths, challenges, and opportunities presented by QCA. Ninety administrative and clinical key informants interviewed across 10 NYC area safety net hospitals. Transcribed interviews were coded by 3 investigators using an iterative and interactive approach. Codes were calibrated for QCA, as well as examined using qualitative analysis without QCA. Relative to traditional qualitative analysis, QCA strengths include: (1) addressing causal complexity, (2) results presentation as pathways as opposed to a list, (3) identification of necessary conditions, (4) the option of fuzzy-set calibrations, and (5) QCA-specific parameters of fit that allow researchers to compare outcome pathways. Weaknesses include: (1) few guidelines and examples exist for calibrating interview data, (2) not designed to create predictive models, and (3) unidirectionality. Through its presentation of results as pathways, QCA can highlight factors most important for production of an outcome. This strength can yield unique benefits for HSR not available through other methods.
Pearl, Gill; Cruice, Madeline
People with aphasia can be marginalized by a communicatively inaccessible society. Compounding this problem, routinized exclusion from stroke research leads to bias in the evidence base and subsequent inequalities in service provision. Within the United Kingdom, the Clinical Research Network of the National Institute of Health identified this…
Campbell, Theresa Diane
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
Full Text Available Sheer driving pleasure is the essence of the BMW brand. For this reason, we have an ideal candidate for our real-world interview in this MIR issue about emotions in marketing. Mr. Meysenburg takes us behind the scenes of the world brand from Bavaria, the success of which makes one think that the promised thrill behind the wheel is definitely not a product of chance …
Stevens, Katie; Bernal, Cathy; Devis, Kate; Southgate, Andrew
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.
Quereshi, Charlotte; Standing, Holly C; Swai, Amina; Hunter, Ewan; Walker, Richard; Owens, Stephen
Educational outcomes for young people with epilepsy (YPE) in Hai District, Tanzania, are poor, as is commonly observed elsewhere in Sub-Saharan Africa. The reasons for this finding are not well understood, though stigma arising from supernatural concepts of epilepsy is frequently cited as a barrier to YPE accessing education. In this study, we aimed to explore the reasons why many YPE in Tanzania experience poor access to education, and elicit ways in which education could be improved for YPE according to teachers, parents and YPE. Ten focus group discussions with teachers were organized in Hai schools between March and May 2016. The themes arising from these discussions were identified, coded, analyzed and tested in semi-structured interviews with 19 YPE and 17 parents identified from a prevalent cohort of YPE identified in 2009. Behavioral problems and learning difficulties were cited as the main barriers to education for YPE. Other barriers included parental stigmatization, teachers' inadequate seizure management, and limited access to specialist schools. Teachers perceived that parents and YPE believe in spiritual etiology and traditional management for epilepsy. However, the majority of teachers, parents, and YPE cited biological etiology and management options, although understanding of epilepsy etiology and management could be improved amongst all groups. A multidimensional approach is needed to improve educational access, and hence outcomes, for YPE. Widespread community education is needed to improve knowledge of epilepsy etiology and management. Teachers require seizure management training, and parents need help to recognize YPE's right to education. Educational needs assessments would help to identify YPE requiring specialist schooling, and access to this could be improved. These interventions will likely reduce stigma, ensure appropriate academic and pastoral care at school, and thus enable YPE to attend, and succeed, in education. Copyright © 2017
Weinbaum, Rebecca K.; Onwuegbuzie, Anthony J.
In most qualitative research studies involving the creation of interview transcriptions, researchers seldom demonstrate much reflexivity about the transcription process, rarely making mention of transcription processes as part of their reporting of data collection and analysis procedures beyond a simple statement that audio- or videotaped data…
Sternquist, Brenda; Huddleston, Patricia; Fairhurst, Ann
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…
Gonzalvez, Mr V; Schlueter, Mr M; Slabe, Ms A; Schmid, Mr O
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
Iacono, T.; Carling-Jenkins, R.
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…
... 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...
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.
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.
Vreeman, Rachel; Kamaara, Eunice; Kamanda, Allan; Ayuku, David; Nyandiko, Winstone; Atwoli, Lukoye; Ayaya, Samuel; Gisore, Peter; Scanlon, Michael; Braitstein, Paula
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.
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
Festinger, David S; Dugosh, Karen L; Croft, Jason R; Arabia, Patricia L; Marlowe, Douglas B
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.
Parkes, Jacqueline H; Pyer, Michelle; Wray, Paula; Taylor, Jane
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.
Rawson, Timothy M; Castro-Sánchez, Enrique; Charani, Esmita; Husson, Fran; Moore, Luke S P; Holmes, Alison H; Ahmad, Raheelah
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.
Miller, Victoria A; Werner-Lin, Allison; Walser, Sarah A; Biswas, Sawona; Bernhardt, Barbara A
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.
Davison, Kirsten K; Charles, Jo N; Khandpur, Neha; Nelson, Timothy J
Purpose Examine fathers' perceived reasons for their lack of inclusion in pediatric research and strategies to increase their participation. Description We conducted expert interviews with researchers and practitioners (N = 13) working with fathers to inform the development of an online survey. The survey-which measured fathers' perceived reasons for their underrepresentation in pediatric research, recommended recruitment venues, and research personnel and study characteristics valued by fathers-was distributed online and in-person to fathers. Assessment Respondents included 303 fathers. Over 80 % of respondents reported that fathers are underrepresented in pediatric research because they have not been asked to participate. Frequently recommended recruitment venues included community sports events (52 %), social service programs (48 %) and the internet (60 %). Compared with white fathers, more non-white fathers recommended public transit (19 % vs. 10 %, p = .02), playgrounds (16 % vs. 6 %, p = .007) and barber shops (34 % vs. 14 %, p research may increase if researchers explicitly invite father to participate, target father-focused recruitment venues, clearly communicate the benefits of the research for fathers and their families and adopt streamlined study procedures.
Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F
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.
McAlearney, Ann Scheck; Walker, Daniel; Moss, Alexandra DeNardis; Bickell, Nina A.
Background Qualitative Comparative Analysis (QCA) is a methodology created to address causal complexity in social sciences research by preserving the objectivity of quantitative data analysis without losing detail inherent in qualitative research. However, its use in health services research (HSR) is limited, and questions remain about its application in this context. Objective To explore the strengths and weaknesses of using QCA for HSR. Research Design Using data from semi-structured interviews conducted as part of a multiple case study about adjuvant treatment underuse among underserved breast cancer patients, findings were compared using qualitative approaches with and without QCA to identify strengths, challenges, and opportunities presented by QCA. Subjects Ninety administrative and clinical key informants interviewed across ten NYC area safety net hospitals. Measures Transcribed interviews were coded by three investigators using an iterative and interactive approach. Codes were calibrated for QCA, as well as examined using qualitative analysis without QCA. Results Relative to traditional qualitative analysis, QCA strengths include: (1) addressing causal complexity, (2) results presentation as pathways as opposed to a list, (3) identification of necessary conditions, (4) the option of fuzzy-set calibrations, and (5) QCA-specific parameters of fit that allow researchers to compare outcome pathways. Weaknesses include: (1) few guidelines and examples exist for calibrating interview data, (2) not designed to create predictive models, and (3) unidirectionality. Conclusions Through its presentation of results as pathways, QCA can highlight factors most important for production of an outcome. This strength can yield unique benefits for HSR not available through other methods. PMID:26908085
Lippke, Lena; Tanggaard, Lene
Over the last few decades, qualitative research has been acknowledged as a peopled practice in which subjectivities come into play. The main argument presented in this article is that qualitative research involves “muddy,” troublesome, interactional passages, because of a complex interplay between...... situated identities among the participants cross each other. We emphasize the value of daring to lean in to the muddiness of peopled research, use it as an analytical tool and present it in its imperfect form. This approach contributes to transparency in qualitative research, opens up the data in a new way...... subjectivities, situated identities, emotions, and conversational genres. Based on ethnographic fieldwork at a Danish Vocational Educational Training College, we introduce the concept of “leaning in” to provide an analytical grasp of the “muddy” interactional tension field in an interview situation, in which...
Virues-Ortega, Javier; Hurtado-Parrado, Camilo; Martin, Toby L.; Julio, Flávia
Mario Bunge is one of the most prolific philosophers of our time. Over the past sixty years he has written extensively about semantics, ontology, epistemology, philosophy of science and ethics. Bunge has been interested in the philosophical and methodological implications of modern psychology and more specifically in the philosophies of the relation between the neural and psychological realms. According to Bunge, functionalism, the philosophical stand of current psychology, has limited explanatory power in that neural processes are not explicitly acknowledged as components or factors of psychological phenomena. In Matter and Mind (2010), Bunge has elaborated in great detail the philosophies of the mind-brain dilemma and the basis of the psychoneural identity hypothesis, which suggests that all psychological processes can be analysed in terms of neural and physical phenomena. This article is the result of a long interview with Dr. Bunge on psychoneural identity and brain-behaviour relations.
Petersen, Kit Stender
In this article I will illustrate how our understanding of the interview situation changes when we rethink it with some of the concepts from Karen Barad’s notion of agential realism. With concepts such as ‘apparatuses’, ‘phenomena‘, ‘intra-action’ and ‘material-discursive’ (Barad, 2007) it become...... the children’s ways of responding to my questions and re-negotiated the positions of interviewer and interviewee.......In this article I will illustrate how our understanding of the interview situation changes when we rethink it with some of the concepts from Karen Barad’s notion of agential realism. With concepts such as ‘apparatuses’, ‘phenomena‘, ‘intra-action’ and ‘material-discursive’ (Barad, 2007) it becomes...... possible to focus more extensively on how matter matters in the interview situation. Re-thinking the interview as an intraview1, I argue that Barad’s concepts will enhance our awareness not only of how the researcher affects the interview but also of how certain kinds of materiality in interview situations...
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.
Rennie, Stuart; Groves, Allison K; Hallfors, Denise Dion; Iritani, Bonita J; Odongo, Fredrick S; Luseno, Winnie K
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.
Ginsburg, Herbert P.; Lee, Young-Sun; Pappas, Sandra
Formative assessment involves the gathering of information that can guide the teaching of individual or groups of children. This approach requires a sound understanding of children's thinking and learning, as well as an effective method for gaining the information. We propose that formative assessment should employ a version of clinical…
Gollin, Lisa X; Harrigan, Rosanne C; Calderón, José L; Perez, John; Easa, David
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.
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).
Boote, Jonathan D; Twiddy, Maureen; Baird, Wendy; Birks, Yvonne; Clarke, Clare; Beever, Daniel
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.
Jinks, Clare; Carter, Pam; Rhodes, Carol; Taylor, Robert; Beech, Roger; Dziedzic, Krysia; Blackburn, Steven; Hughes, Rhian; Ong, Bie Nio
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.
Hasse Jørgensen, Stina; Alexandra Sofie, Jönsson
We have interviewed Gavin Butt about his research interest in the cross-field between performance and performativity in the visual arts: queer theory, queer cultures and their histories, post-second world war U.S. art, contemporary art and critical theory.......We have interviewed Gavin Butt about his research interest in the cross-field between performance and performativity in the visual arts: queer theory, queer cultures and their histories, post-second world war U.S. art, contemporary art and critical theory....
Fortier, Catherine Brawn; Amick, Melissa M; Grande, Laura; McGlynn, Susan; Kenna, Alexandra; Morra, Lindsay; Clark, Alexandra; Milberg, William P; McGlinchey, Regina E
Report the prevalence of lifetime and military-related traumatic brain injuries (TBIs) in Operation Enduring Freedom and Operation Iraqi Freedom (OEF/OIF) veterans and validate the Boston Assessment of TBI-Lifetime (BAT-L). The BAT-L is the first validated, postcombat, semistructured clinical interview to characterize head injuries and diagnose TBIs throughout the life span. Community-dwelling convenience sample of 131 OEF/OIF veterans. TBI criteria (alteration of mental status, posttraumatic amnesia, and loss of consciousness) were evaluated for all possible TBIs, including a novel evaluation of blast exposure. BAT-L, Ohio State University TBI Identification Method (OSU-TBI-ID). About 67% of veterans incurred a TBI in their lifetime. Almost 35% of veterans experienced at least 1 military-related TBI; all were mild in severity, 40% of them were due to blast, 50% were due to some other (ie, blunt) mechanism, and 10% were due to both types of injuries. Predeployment TBIs were frequent (45% of veterans). There was strong correspondence between the BAT-L and the OSU-TBI-ID (Cohen κ = 0.89; Kendall τ-b = 0.95). Interrater reliability of the BAT-L was strong (κs >0.80). The BAT-L is a valid instrument with which to assess TBI across a service member's lifetime and captures the varied and complex nature of brain injuries across OEF/OIF veterans' life span.
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.
Smith, T; Moore, E J; Tunstall-Pedoe, H
To monitor the conduct of medical research projects that have already been approved by the local medical research ethics committee. Follow up study of ethically approved studies (randomly selected from all the studies approved in the previous year) by examination of patients' case notes, consent forms, and research records and by interview of the researchers at their workplace. Tayside, Scotland (mixed rural and urban population). 30 research projects approved by Tayside local medical research ethics committee. Adherence to the agreed protocol, particularly for recruitment (obtaining and recording informed consent) and for specific requirements of the ethics committee, including notification of changes to the protocol and of adverse events. In one project only oral consent had been obtained, and in a quarter of the studies one or more consent forms were incorrectly completed. Inadequate filing of case notes in five studies and of consent forms in six made them unavailable for scrutiny. Adverse events were reported, but there was a general failure to report the abandoning or non-starting of projects in two studies the investigators failed to notify a change in the responsible researcher. Monitoring of medical research by local medical research ethics committees promotes and preserves ethical standards, protects subjects and researchers, discourages fraud, and has the support of investigators. We recommend that 10% of projects should undergo on-site review, with all others monitored by questionnaire. This would require about six person hours of time and a salary bill of 120 pounds per study monitored.
Pérez Jolles, Mónica; Martinez, Maria; Garcia, San Juanita; Stein, Gabriela L; Thomas, Kathleen C
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.
Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A
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.
Ang, Dennis C; Kaleth, Anthony S; Bigatti, Silvia; Mazzuca, Steven A; Jensen, Mark P; Hilligoss, Janna; Slaven, James; Saha, Chandan
Regular exercise is associated with important benefits in patients with fibromyalgia (FM). Unfortunately, long-term maintenance of exercise after a structured program is rare. The present study tested the efficacy of Motivational Interviewing (MI) to promote exercise and improve symptoms in patients with FM. A total of 216 patients with FM were randomized to 6 MI sessions (n=107) or an equal number of FM self-management lessons (education control/EC, n=109). Co-primary endpoints were an increase of 30 minutes in moderate-vigorous physical activity and improvement in the Fibromyalgia Impact Questionnaire (FIQ)-Physical Impairment score, assessed at pretreatment, posttreatment, and 3-month and 6-month follow-up. Secondary outcomes included clinically meaningful improvements in FIQ score, pain severity ratings, and a 6-minute walk test. There were no significant treatment group differences in either co-primary endpoint at 6-month follow-up. However, more MI participants than controls exhibited meaningful improvements in FIQ score at 6-month follow-up (62.9% vs. 49.5%, P=0.06). Compared with EC participants, MI participants also displayed a larger increment in their 6-minute walk test (43.9 vs. 24.8 m, P=0.03). In addition, MI was superior to EC in increasing the number of hours of physical activity immediately postintervention and in reducing pain severity both immediately after the intervention and at 3-month follow-up. Despite a lack of benefits on long-term outcome, MI seems to have short-term benefits with respect to self-report physical activity and clinical outcomes. This is the first study in FM that explicitly addresses exercise maintenance as a primary aim.
Pino, Marco; Parry, Ruth; Feathers, Luke; Faull, Christina
Research using video recordings can advance understanding of healthcare communication and improve care, but making and using video recordings carries risks. To explore views of hospice patients, carers and clinical staff about whether videoing patient-doctor consultations is acceptable for research and training purposes. We used semi-structured group and individual interviews to gather hospice patients, carers and clinical staff views. We used Braun and Clark's thematic analysis. Interviews were conducted at one English hospice to inform the development of a larger video-based study. We invited patients with capacity to consent and whom the care team judged were neither acutely unwell nor severely distressed (11), carers of current or past patients (5), palliative medicine doctors (7), senior nurses (4) and communication skills educators (5). Participants viewed video-based research on communication as valuable because of its potential to improve communication, care and staff training. Video-based research raised concerns including its potential to affect the nature and content of the consultation and threats to confidentiality; however, these were not seen as sufficient grounds for rejecting video-based research. Video-based research was seen as acceptable and useful providing that measures are taken to reduce possible risks across the recruitment, recording and dissemination phases of the research process. Video-based research is an acceptable and worthwhile way of investigating communication in palliative medicine. Situated judgements should be made about when it is appropriate to involve individual patients and carers in video-based research on the basis of their level of vulnerability and ability to freely consent.
Wilson, Patricia; Mathie, Elspeth; Poland, Fiona; Keenan, Julia; Howe, Amanda; Munday, Diane; Kendall, Sally; Cowe, Marion; Staniszewska, Sophie; Goodman, Claire
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.
Dyregrov, Kari Madeleine; Dieserud, Gudrun; Hjelmeland, Heidi Marie; Straiton, Melanie; Rasmussen, Mette Lyberg; Knizek, Birthe Loa; Leenaars, Antoon Adrian
Too often ethical boards delay or stop research projects with vulnerable populations, influenced by presumed rather than empirically documented vulnerability. The article investigates how participation is experienced by those bereaved by suicide. Experiences are divided into 3 groups: (a) overall positive (62%), (b) unproblematic (10%), and (c)…
Ainsworth, Mary D. S.; Marvin, Robert S.
Developmental psychologist Ainsworth discusses early influences on her work in attachment theory; similarities and differences in attachment behaviors across cultures; construction of assessments and research designs; individual differences in attachment and maternal support; and the influence of early relationships on later ones. (HTH)
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
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
Pitak-Arnnop, P; Sader, R; Hervé, C; Dhanuthai, K; Bertrand, J-Ch; Hemprich, A
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.
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.
Porteri, Corinna; Petrini, Carlo
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.
Boulos, Maged N Kamel; Curtis, Andrew J; Abdelmalik, Philip
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.
Townsend, Anne; Cox, Susan M
Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7. A predominant theme to emerge was 'participation in health research to access health services.' Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a "trial and error" process akin to research, which further blurred the boundaries between research and treatment. Our findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or
Background Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. Methods This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7. Results A predominant theme to emerge was 'participation in health research to access health services.’ Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a “trial and error” process akin to research, which further blurred the boundaries between research and treatment. Conclusions Our findings have implications for recruitment, informed consent, and the dichotomizing of medical
von Buelow, A
When the treasury are not as full as they were, the question automatically arises as to public support for large-scale research facilities and basic research. The new Minister for Research in the Federal Republic of Germany clearly discloses what is possible at present and what is not in the way of State support for research. Therefore the Minister demands that industry should share in basic research and in the large-scale technological facilities required for research.
Kauffmann, Lene Teglhus
making drew on ideologies, norms and values central to the field and thereby the strategies employed by the informants as well as by the researcher could be seen as wayfaring strategies; creating the paths in the field as they go along. Such an approach to interviews opens up the creative character...... of knowledge production and points out the role of the researcher as an active participant in the creative process....
Nørgaard, Lotte Stig; Sørensen, Ellen Westh
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.
Wendler, David; Shah, Seema
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.
The Waste Policy Institute (WPI), through a cooperative agreement with the U.S. Department of Energy's (DOE) Office of Science and Technology (OST), conducted telephone interviews with people who requested OST publications to better understand why they wanted information from OST, how they used the information, and whether the information met their needs. Researchers selected 160 people who requested one of the two OST publications-either the Technology Summary Series (Rainbow Books) or the Initiatives newsletter. Of the 160 selected, interviewers spoke with 79 people nationwide representing six stakeholder audience categories
Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn
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.
Hilliard, Thomas; Macan, Therese
The authors examined individual difference and self-regulatory variables to understand how an interviewer rates a candidate's personality. Participants were undergraduate students at a large midwestern university in the United States who completed measures of individual differences, read an employment interview transcript involving a candidate applying for a customer service job, and rated the candidate's personality. Participants' agreeableness, social skills, and communion striving were positively associated with their ratings of the candidate's helpfulness and obedience. The authors provide a foundation for further research on interviewer effectiveness and the processes underlying the employment interview.
Lees, David; Procter, Nicholas; Fassett, Denise; Handley, Christine
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.
Jørgensen, Clara R; Eskildsen, Nanna B; Thomsen, Thora G
their experiences. RESULTS: Differences were identified between the academic researcher and the peer interviewers in the types of questions they asked and the degree to which personal narrative was used in the interview. Peer interviewers varied significantly in their approach. Research participants were positive......BACKGROUND: A range of benefits have been reported from engaging peer interviewers in qualitative interviews, but little systematic evaluation exists to assess their impact on both process and outcomes of qualitative interviews in health research. OBJECTIVE: To investigate the impact of involving...... patient representatives as peer interviewers in a research project on patient empowerment. DESIGN: 18 interviews were carried out as part of the wider study, seven by the academic researcher alone and eleven jointly with a peer interviewer. The interviews were analysed quantitatively and qualitatively...
Walker, Sarah Cusworth; Bishop, Asia S; Pullmann, Michael D; Bauer, Grace
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.
Nelson, Kimberly M; Ramirez, Jaime J; Carey, Michael P
Adolescent males interested in sex with males (AMSM) are an important audience for HIV prevention interventions, but they are difficult to reach due to their age and social stigma. We aim to identify efficient methods to recruit and retain AMSM in online research. Interviews with 14-to-18-year-old AMSM (N=16) were conducted at 2017 Pride events in Boston, MA and Providence, RI. Participants reported that (1) social media platforms are viable recruitment venues; (2) recruitment advertisements should describe the study using colorful/bright pictures, familiar words, and information about compensation; (3) surveys should be recruitment and retention procedures to increase the efficiency of HIV prevention research for this at-risk group. ©Kimberly M Nelson, Jaime J Ramirez, Michael P Carey. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 21.12.2017.
Adams, Mary; Caffrey, Louise; McKevitt, Christopher
In the UK, the recruitment of patients into clinical research is a national health research and development policy priority. There has been limited investigation of how national level factors operate as barriers or facilitators to recruitment work, particularly from the perspective of staff undertaking patient recruitment work. The aim of this study is to identify and examine staff views of the key organisational barriers and facilitators to patient recruitment work in one clinical research group located in an NHS Academic Health Science Centre. A qualitative study utilizing in-depth, one-to-one semi-structured interviews with 11 purposively selected staff with particular responsibilities to recruit and retain patients as clinical research subjects. Thematic analysis classified interview data by recurring themes, concepts, and emergent categories for the purposes of establishing explanatory accounts. The findings highlight four key factors that staff perceived to be most significant for the successful recruitment and retention of patients in research and identify how staff located these factors within patients, studies, the research centre, the trust, and beyond the trust. Firstly, competition for research participants at an organisational and national level was perceived to undermine recruitment success. Secondly, the tension between clinical and clinical research workloads was seen to interrupt patient recruitment into studies, despite national funding arrangements to manage excess treatment costs. Thirdly, staff perceived an imbalance between personal patient burden and benefit. Ethical committee regulation, designed to protect patients, was perceived by some staff to detract from clarification and systematisation of incentivisation strategies. Finally, the structure and relationships within clinical research teams, in particular the low tacit status of recruitment skills, was seen as influential. The results of this case-study, conducted in an exemplary NHS
Mammas, Ioannis N; Spandidos, Demetrios A
Professor Anna Kramvis, Research Professor of Molecular Virology at the University of the Witwatersrand in Johannesburg, South Africa, talks about direct-acting antiviral treatments against hepatitis C virus (HCV), as well as the perspective of the development of an effective vaccine against HCV. She emphasises the necessity of vaccination against hepatitis B virus (HBV), highlighting that it is very important that vaccination should be administered at birth in order to prevent mother-to-child transmission (MTCT) of HBV. Professor Kramvis states that vaccination against HBV is safe and that HBV and HCV infections are not contraindications for breastfeeding. Regarding the challenge of Paediatric Virology, she believes that it is a field that during the last years is increasing exponentially, while she concurs that Paediatric Virology subspecialty will be a popular choice for infectious diseases subspecialists. In the context of the 3rd Workshop on Paediatric Virology, which will be held in Athens on October 7th, 2017, Professor Kramvis will give her key lecture on MTCT of HBV and HCV.
Tong, Vincent C. H.
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
Meinecke, Annika L; Lehmann-Willenbrock, Nale; Kauffeld, Simone
Despite a wealth of research on antecedents and outcomes of annual appraisal interviews, the ingredients that make for a successful communication process within the interview itself remain unclear. This study takes a communication approach to highlight leader-follower dynamics in annual appraisal interviews. We integrate relational leadership theory and recent findings on leader-follower interactions to argue (a) how supervisors' task- and relation-oriented statements can elicit employee involvement during the interview process and (b) how these communication patterns affect both supervisors' and employees' perceptions of the interview. Moreover, we explore (c) how supervisor behavior is contingent upon employee contributions to the appraisal interview. We audiotaped 48 actual annual appraisal interviews between supervisors and their employees. Adopting a multimethod approach, we used quantitative interaction coding (N = 32,791 behavioral events) as well as qualitative open-axial coding to explore communication patterns among supervisors and their employees. Lag sequential analysis revealed that supervisors' relation-oriented statements triggered active employee contributions and vice versa. These relation-activation patterns were linked to higher interview success ratings by both supervisors and employees. Moreover, our qualitative findings highlight employee disagreement as a crucial form of active employee contributions during appraisal interviews. We distinguish what employees disagreed about, how the disagreement was enacted, and how supervisors responded to it. Overall employee disagreement was negatively related to ratings of supervisor support. We discuss theoretical implications for performance appraisal and leadership theory and derive practical recommendations for promoting employee involvement during appraisal interviews. (PsycINFO Database Record (c) 2017 APA, all rights reserved).
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.
Marjanovic, Sonja; Lichten, Catherine A; Robin, Enora; Parks, Sarah; Harte, Emma; MacLure, Calum; Walton, Clare; Pickett, James
To identify research support strategies likely to be effective for strengthening the UK's dementia research landscape and ensuring a sustainable and competitive workforce. Interviews and qualitative analysis; systematic internet search to track the careers of 1500 holders of UK doctoral degrees in dementia, awarded during 1970-2013, to examine retention in this research field and provide a proxy profile of the research workforce. 40 interviewees based in the UK, whose primary role is or has been in dementia research (34 individuals), health or social care (3) or research funding (3). Interviewees represented diverse fields, career stages and sectors. While the UK has diverse strengths in dementia research, needs persist for multidisciplinary collaboration, investment in care-related research, supporting research-active clinicians and translation of research findings. There is also a need to better support junior and midlevel career opportunities to ensure a sustainable research pipeline and future leadership. From a sample of 1500 UK doctorate holders who completed a dementia-related thesis in 1970-2013, we identified current positions for 829 (55%). 651 (43% of 1500) could be traced and identified as still active in research (any field) and 315 (21%) as active in dementia research. Among recent doctoral graduates, nearly 70% left dementia research within 4-6 years of graduation. A dementia research workforce blueprint should consider support for individuals, institutions and networks. A mix of policy interventions are needed, aiming to attract and retain researchers; tackle bottlenecks in career pathways, particularly at early and midcareer stages (eg, scaling-up fellowship opportunities, rising star programmes, bridge-funding, flexible clinical fellowships, leadership training); and encourage research networks (eg, doctoral training centres, succession and sustainability planning). Interventions should also address the need for coordinated investment to improve
Ridky, R. W.
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
Gisore, P; Were, F; Ayuku, D; Kaseje, D
With the growth of Community-Based Health Information (CBHIS) for decision making and service provision in the low income settings, innovative models of addressing Maternal and Newborn Health (MNH) morbidity and mortality are necessary. World Health Organization (WHO) estimates that five hundred thousand mothers and about three million newborns die each year in middle and low income countries. To stimulate interest in utilisation CBHIS for research and interventions, with an illustration of potential using on Motivational Interviewing intervention. Literature searched electronically, discussion with behavioural experts, health system researchers, and maternal and Newborn Health (MNH) experts, and book reviews. Broad selection criteria including all current literature relevantsubjects including CBHIS, behaviour change methods and Community MNH. A checklist for relevance was used to identify the relevant behaviour change intervention to use in the illustration. A method that met the criteria was identified, and based on a discussion with behavioural experts, the decision to use it the illustration was reached. Motivational Interviewing Intervention (MII) should be considered for implementation and study on near-term Pregnant women in a setting where these mothers can be identified and a targeted intervention instituted.
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
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.
Wilson, Christine Brown; Clissett, Philip
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
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.
Taylor, Rachel M; Mohain, Jasjeet; Gibson, Faith; Solanki, Anita; Whelan, Jeremy; Fern, Lorna A
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
Evalina van Wijk RN, PhD
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.
Full Text Available Abstract Background Reliable, valid, and easy-to-administer instruments to identify possible caseness and to provide proxies for clinical diagnoses are needed in epidemiological research on child and adolescent mental health. The aim of this study is to provide further validity data for a parent telephone interview focused on Autism - Tics, Attention-deficit/hyperactivity disorder (AD/HD, and other Comorbidities (A-TAC, for which reliability and preliminary validation data have been previously reported. Methods Parents of 91 children clinically diagnosed at a specialized Child Neuropsychiatric Clinic, 366 control children and 319 children for whom clinical diagnoses had been previously assigned were interviewed by the A-TAC over the phone. Interviewers were blind to clinical information. Different scores from the A-TAC were compared to the diagnostic outcome. Results Areas under ROC curves for interview scores as predictors of clinical diagnoses were around 0.95 for most disorders, including autism spectrum disorders (ASDs, attention deficit/hyperactivity disorder (AD/HD, tic disorders, developmental coordination disorders (DCD and learning disorders, indicating excellent screening properties. Screening cut-off scores with sensitivities above 0.90 (0.95 for ASD and AD/HD were established for most conditions, as well as cut-off scores to identify proxies to clinical diagnoses with specificities above 0.90 (0.95 for ASD and AD/HD. Conclusions The previously reported validity of the A-TAC was supported by this larger replication study using broader scales from the A-TAC-items and a larger number of diagnostic categories. Short versions of algorithms worked as well as larger. Different cut-off levels for screening versus identifying proxies for clinical diagnoses are warranted. Data on the validity for mood problems and oppositional defiant/conduct problems are still lacking. Although the A-TAC is principally intended for epidemiological research
The research studied the social impacts of the final disposal of spent nuclear fuel by the means of qualitative methods. The principal research material consisted of 49 theme interviews carried out in four municipalities, Eurajoki, Kuhmo, Loviisa and Aeaenekoski, all of which have a candidate site for spent fuel disposal. The interviews covered residents living near the possible disposal site, local authorities from different sectors of the municipality, social workers, youth workers and teachers, local businesses, trade and other organisations as well as environmental and citizen movements. When considering the risk conceptions and worries over safety, a fairly consistent view on the safety of the different phases of the project can be identified in all the municipalities. The transportation of nuclear waste aroused definitely the most worries over safety, especially because of the danger of sabotage and traffic accidents. When considering the encapsulation stage' the interviews revealed that risks are associated with this stage because it entails a 'human factor': the treatment of a dangerous substance in a disposal site above ground is considered hazardous. When considering the time after the closing of the disposal system, an opinion could be formed on the basis of the interviews that a final disposal system in hard bedrock would probably perform adequately in the short term but there can be no certain knowledge of risks in the long term. Confidence or lack of confidence in the safety of the project appeared as the most important factor causing social impacts. As a summary of the results, it can be concluded that especially (1) familiarity of the risk and (2) the possibility that taking risks are advantageous to oneself increase the acceptability of the risk. These are also the factors which distinguish the municipalities with nuclear power plants (Loviisa and Eurajoki) from the other two municipalities. The fair allocation of risks as well as the division of
Reinhard, CarrieLynn D.
, an amount of control was required over the nature of those experiences. With these requirements, a hybrid study was designed by deconstructing the conceptualization of "the experiment" and utilizing both quantitative and qualitative methods. The resulting study involved the following: a within......-subjects experimental design served as the framework for the study, while in-depth qualitative interviews were employed alongside surveys and audio and video recording as the data collection methods. Data collection occurred while participants were engaging with the media products, via talk aloud protocols......, and afterwards when they were asked to recall and compare these situations in open-ended questionnaires and interviews structured using Dervin's Sense-Making Methodology. Having completed the study using this mixed method(ology) approach, I discuss the effectiveness of this approach, and where the approach...
Viktor M. Fedoseyev
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
Vale Claire L
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
Vale, Claire L; Thompson, Lindsay C; Murphy, Claire; Forcat, Silvia; Hanley, Bec
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
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
Smith, Susan C; Penumetcha, Meera
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.
Hassan, Lamiece; Swarbrick, Caroline; Sanders, Caroline; Parker, Angela; Machin, Matt; Tully, Mary P; Ainsworth, John
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
Conn, P Jeffrey
Dr Conn is the Lee E Limbird Professor of Pharmacology at Vanderbilt University and Director of the Vanderbilt Center for Neuroscience Drug Discovery (VCNDD). Dr Conn received a PhD in Pharmacology from Vanderbilt in 1986 and pursued postdoctoral studies at Yale University. He served as a professor of Pharmacology at Emory University from 1988 to 2000, before moving to Merck and Co. (PA, USA) as head of the Department of Neuroscience. Dr Conn moved to Vanderbilt University in 2003 where he is the founding director of the VCNDD, with a primary mission of facilitating translation of recent advances in basic science to novel therapeutics. The VCNDD consists of approximately 100 full-time scientists and has advanced novel molecules from four major programs as development candidates for clinical testing with industry partners. Dr Conn has served in editorial positions with multiple international journals and has served the scientific advisory boards of multiple foundations and companies. He has received numerous awards based on the impact of his basic and translational research. Dr Conn's current research is focused on development of novel treatment strategies for schizophrenia, Parkinson's disease and other serious brain disorders. Interview conducted by Hannah Coaker, Assistant Commissioning Editor.
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
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.
This interview is part of a series of interviews on open science and digital scholarship conducted in 2013 with researchers from various backgrounds. For an analysis of the interviews see: Scheliga, Kaja and Sascha Friesike. 2014. “Putting open science into practice: A social dilemma?” First Monday. Volume 19, Number 9. DOI: http://dx.doi.org/10.5210/fm.v19i9.5381
This interview is part of a series of interviews on open science and digital scholarship conducted in 2013 with researchers from various backgrounds. For an analysis of the interviews see: Scheliga, Kaja and Sascha Friesike. 2014. “Putting open science into practice: A social dilemma?” First Monday. Volume 19, Number 9. DOI: http://dx.doi.org/10.5210/fm.v19i9.5381
Mauz, Elvira; von der Lippe, Elena; Allen, Jennifer; Schilling, Ralph; Müters, Stephan; Hoebel, Jens; Schmich, Patrick; Wetzstein, Matthias; Kamtsiuris, Panagiotis; Lange, Cornelia
Population-based surveys currently face the problem of decreasing response rates. Mixed-mode designs are now being implemented more often to account for this, to improve sample composition and to reduce overall costs. This study examines whether a concurrent or sequential mixed-mode design achieves better results on a number of indicators of survey quality. Data were obtained from a population-based health interview survey of adults in Germany that was conducted as a methodological pilot study as part of the German Health Update (GEDA). Participants were randomly allocated to one of two surveys; each of the surveys had a different design. In the concurrent mixed-mode design ( n = 617) two types of self-administered questionnaires (SAQ-Web and SAQ-Paper) and computer-assisted telephone interviewing were offered simultaneously to the respondents along with the invitation to participate. In the sequential mixed-mode design ( n = 561), SAQ-Web was initially provided, followed by SAQ-Paper, with an option for a telephone interview being sent out together with the reminders at a later date. Finally, this study compared the response rates, sample composition, health indicators, item non-response, the scope of fieldwork and the costs of both designs. No systematic differences were identified between the two mixed-mode designs in terms of response rates, the socio-demographic characteristics of the achieved samples, or the prevalence rates of the health indicators under study. The sequential design gained a higher rate of online respondents. Very few telephone interviews were conducted for either design. With regard to data quality, the sequential design (which had more online respondents) showed less item non-response. There were minor differences between the designs in terms of their costs. Postage and printing costs were lower in the concurrent design, but labour costs were lower in the sequential design. No differences in health indicators were found between
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
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.
Mitchell, Jude F; Boisvert, Chantal J; Reuter, Jon D; Reynolds, John H; Leblanc, Mathias
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.
Howe, A; Mathie, E; Munday, D; Cowe, M; Goodman, C; Keenan, J; Kendall, S; Poland, F; Staniszewska, S; Wilson, P
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
Scientists from five Swedish universities were interviewed about open second cycle education. Research groups and scientists collaborate closely with industry, and the selection of scientists for the study was made in relation to an interest in developing technology-enhanced open education, indicated by applications for funding from the Knowledge…
Baxter, Susan; Muir, Delia; Brereton, Louise; Allmark, Christine; Barber, Rosemary; Harris, Lydia; Hodges, Brian; Khan, Samaira; Baird, Wendy
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
Ahern, Tracey; Gardner, Anne; Gardner, Glenn; Middleton, Sandy; Della, Phillip
The final phase of a three phase study analysing the implementation and impact of the nurse practitioner role in Australia (the Australian Nurse Practitioner Project or AUSPRAC) was undertaken in 2009, requiring nurse telephone interviewers to gather information about health outcomes directly from patients and their treating nurse practitioners. A team of several registered nurses was recruited and trained as telephone interviewers. The aim of this paper is to report on development and evaluation of the training process for telephone interviewers. The training process involved planning the content and methods to be used in the training session; delivering the session; testing skills and understanding of interviewers post-training; collecting and analysing data to determine the degree to which the training process was successful in meeting objectives and post-training follow-up. All aspects of the training process were informed by established educational principles. Interrater reliability between interviewers was high for well-validated sections of the survey instrument resulting in 100% agreement between interviewers. Other sections with unvalidated questions showed lower agreement (between 75% and 90%). Overall the agreement between interviewers was 92%. Each interviewer was also measured against a specifically developed master script or gold standard and for this each interviewer achieved a percentage of correct answers of 94.7% or better. This equated to a Kappa value of 0.92 or better. The telephone interviewer training process was very effective and achieved high interrater reliability. We argue that the high reliability was due to the use of well validated instruments and the carefully planned programme based on established educational principles. There is limited published literature on how to successfully operationalise educational principles and tailor them for specific research studies; this report addresses this knowledge gap. Copyright © 2012 Elsevier
This article presents a transcript of an interview that the author conducted with Noam Chomsky. In this interview, Chomsky talks about language acquisition and his theory of Universal Grammar. He then explains how the USA best exemplifies the individualist national culture. He also cites the challenges researchers should address in intercultural…
Briscoe, William; O'Rielly, Grant; Fissum, Kevin
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.
Full Text Available The first part of the interview deals with the education of Herwig Wolfram in Wien and Los Angeles (one year and the relationship with the scholars who influenced him more (H. von Fichtenau, G.B. Ladner, the identification of the study of kingship and the choice of combining constantly the historical with the philological method. The interview then turns to the encounter with R. Wenskus and the theory of the ethnogenesis and the impact of this encounter on the studies of Wolfram and ultimately on the “Viennese” scholars. Another part is devoted to the book on the Goths and to the developments of the "Wien school" in relation to the study of early medieval peoples of Europe and to participation in international debate, very vibrant, on the subject. Also taken into consideration the themes of kingship, the local history, the "auxiliary disciplines" and historiographical communication and finally how research in organized and evaluated in Austria.
Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Bossert, Sabine; Strech, Daniel
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.
Escadafal, Richard; Barbero, Celia; Exbrayat, Williams; Marques, Maria Jose; Ruiz, Manuel; El Haddadi, Anass; Akhtar-Schuster, Mariam
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
Jørgensen, Clara R; Eskildsen, Nanna B; Thomsen, Thora G; Nielsen, Inger D; Johnsen, Anna T
A range of benefits have been reported from engaging peer interviewers in qualitative interviews, but little systematic evaluation exists to assess their impact on both process and outcomes of qualitative interviews in health research. To investigate the impact of involving patient representatives as peer interviewers in a research project on patient empowerment. 18 interviews were carried out as part of the wider study, seven by the academic researcher alone and eleven jointly with a peer interviewer. The interviews were analysed quantitatively and qualitatively to explore potential differences between interviews conducted by the researcher alone and interviews conducted jointly by the researcher and the peer interviewers. A phone evaluation of the peer interviews was carried out with the research participants, and notes were thematically analysed to understand their experiences. Differences were identified between the academic researcher and the peer interviewers in the types of questions they asked and the degree to which personal narrative was used in the interview. Peer interviewers varied significantly in their approach. Research participants were positive about the experience of being interviewed by a peer interviewer. No firm conclusions could be made about impact on outcomes. The uniqueness and complexity of qualitative interviews made it difficult to provide any firm conclusions about the impact of having peer interviewers on the research outcomes, and the benefits identified from the analysis mostly related to the process of the interviews. Benefits from using peer interviewers need to be considered alongside relevant ethical considerations, and available resources for training and support. © 2017 The Authors Health Expectations published by John Wiley & Sons Ltd.
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.
Jivraj, Jamil; Sacrey, Lori-Ann; Newton, Amanda; Nicholas, David; Zwaigenbaum, Lonnie
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…
Full Text Available This paper contributes to the growing domain of ‘post-qualitative’ research and experiments with a new (representational form to move away from traditional and clichéd descriptions of research methods. In this paper, I want to interrogate the category of interview, and the habit of interviewing, to disrupt the clichés, so as to allow thinking of different ways of writing/speaking/representing the interactions between researcher and researched that will breathe new life into qualitative inquiries. I will attempt to flatten and shred, destabilise and disrupt our common-sense ideas about interview, including those held most sacred to the qualitative community, that of anonymity and confidentiality, as well as the privilege of the ‘transcript’ in re-presenting interview data.
Mather, John C.
John Mather answers questions for an interview for the Bentham Science Newsletter. He covers topics ranging from his childhood, his professional career and his thoughts on research, technology and today's scientists and engineers.
Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Strech, Daniel
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.
Ellen F. Goldman
Full Text Available Interviewing corporate elites has received limited attention in the methodological literature. Such elites are considered highly difficult to gain access to and, if involved, are believed to use their power asymmetry to dominate the interview. Understanding the context is considered essential to elite access, interview conduct, and interpretation of findings. The healthcare sector provides interesting challenges for in-depth elite interviewing, including historical norms regarding interview access, types, and duration. In this article, the authors report on the strategies used to gain access to and engage healthcare elites who participated in multiple personal interviews using the Seidman in-depth phenomenological interviewing method. Techniques for identifying and recruiting potential participants, scheduling and preparing for the interview, and establishing rapport are described. Concept mapping is presented as a way of fully engaging the elites in the tripartite interview process and facilitating trustworthiness. The lessons learned offer important strategies for those undertaking phenomenological research with elites.
Novaes, Maria Rita Garbi; Guilhem, Dirce; Barragan, Elena; Mennin, Stewart
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
Gibson, Andy; Welsman, Jo; Britten, Nicky
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.
Hall, Natalie; Durand, Marie-Anne; Mengoni, Silvana E.
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…
Why do patients decline surgical trials? Findings from a qualitative interview study embedded in the Cancer Research UK BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy).
Harrop, Emily; Kelly, John; Griffiths, Gareth; Casbard, Angela; Nelson, Annmarie
Surgical trials have typically experienced recruitment difficulties when compared with other types of oncology trials. Qualitative studies have an important role to play in exploring reasons for low recruitment, although to date few such studies have been carried out that are embedded in surgical trials. The BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy) is a study to determine the feasibility of randomisation to open versus laparoscopic access/robotic cystectomy in patients with bladder cancer. We describe the results of a qualitative study embedded within the clinical trial that explored why patients decline randomisation. Ten semi-structured interviews with patients who declined randomisation to the clinical trial, and two interviews with recruiting research nurses were conducted. Data were analysed for key themes. The majority of patients declined the trial because they had preferences for a particular treatment arm, and in usual practice could choose which surgical method they would be given. In most cases the robotic option was preferred. Patients described an intuitive 'sense' that favoured the new technology and had carried out their own inquiries, including Internet research and talking with previous patients and friends and family with medical backgrounds. Medical histories and lifestyle considerations also shaped these personalised choices. Of importance too, however, were the messages patients perceived from their clinical encounters. Whilst some patients felt their surgeon favoured the robotic option, others interpreted 'indirect' cues such as the 'established' reputation of the surgeon and surgical method and comments made during clinical assessments. Many patients expressed a wish for greater direction from their surgeon when making these decisions. For trials where the 'new technology' is available to patients, there will likely be difficulties with recruitment. Greater attention could be paid to how messages about
Bogen indkredser, hvad der gør et interview kritisk og udleder derfra det kritiske interviews overordnede mål og spilleregler.......Bogen indkredser, hvad der gør et interview kritisk og udleder derfra det kritiske interviews overordnede mål og spilleregler....
Anderson de Cuevas, Rachel; Nylén, Lotta; Burström, Bo; Whitehead, Margaret
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
Di Persia, Francisco N
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.
Montalvo, Frank F.
Describes the critical-incident interview, a cross-cultural training technique that helps social work students assess clients' ethnic- and racial-identity development. Uses examples from student interviews to present the steps involved in teaching the technique. Includes guidelines for selecting and interviewing informants, and gives three scales…
MAXimising Involvement in MUltiMorbidity (MAXIMUM) in primary care: protocol for an observation and interview study of patients, GPs and other care providers to identify ways of reducing patient safety failures.
Daker-White, Gavin; Hays, Rebecca; Esmail, Aneez; Minor, Brian; Barlow, Wendy; Brown, Benjamin; Blakeman, Thomas; Bower, Peter
Increasing numbers of older people are living with multiple long-term health conditions but global healthcare systems and clinical guidelines have traditionally focused on the management of single conditions. Having two or more long-term conditions, or 'multimorbidity', is associated with a range of adverse consequences and poor outcomes and could put patients at increased risk of safety failures. Traditionally, most research into patient safety failures has explored hospital or inpatient settings. Much less is known about patient safety failures in primary care. Our core aims are to understand the mechanisms by which multimorbidity leads to safety failures, to explore the different ways in which patients and services respond (or fail to respond), and to identify opportunities for intervention. We plan to undertake an applied ethnographic study of patients with multimorbidity. Patients' interactions and environments, relevant to their healthcare, will be studied through observations, diary methods and semistructured interviews. A framework, based on previous studies, will be used to organise the collection and analysis of field notes, observations and other qualitative data. This framework includes the domains: access breakdowns, communication breakdowns, continuity of care errors, relationship breakdowns and technical errors. Ethical approval was received from the National Health Service Research Ethics Committee for Wales. An individual case study approach is likely to be most fruitful for exploring the mechanisms by which multimorbidity leads to safety failures. A longitudinal and multiperspective approach will allow for the constant comparison of patient, carer and healthcare worker expectations and experiences related to the provision, integration and management of complex care. This data will be used to explore ways of engaging patients and carers more in their own care using shared decision-making, patient empowerment or other relevant models. Published by
Full Text Available Das Interview ist nach wie vor das beliebteste sozialwissenschaftliche Verfahren des Datengewinns. Ökonomie der Erhebung, Vergleichbarkeit und die Möglichkeit, Einsicht in Praxisbereiche und historisch-biografische Dimensionen zu erhalten, die der direkten Beobachtung kaum zugänglich sind, machen seine Attraktivität aus. Zugleich mehren sich Kritiken, die seine Leistungsfähigkeit problematisieren, indem sie auf die begrenzte Reichweite der Explikationsfähigkeiten der Befragten, die Reaktivität der Erhebung oder die Differenz zwischen Handeln und dem Bericht über Handeln verweisen. Im Beitrag wird zwischen Ansätzen, die das Interview als Text, und solchen, die es als Interaktion verstehen, unterschieden. Nach dem Text-Verständnis werden Interviews unter inhaltlichen Gesichtspunkten analysiert und als Zugang zu einer vorgängigen sozialen oder psychischen Wirklichkeit angesehen. Das Interaktions-Verständnis versteht Interviews dagegen als situierte Praxis, in welcher im Hier und Jetzt von InterviewerInnen und Befragten gemeinsam soziale Sinnstrukturen hergestellt werden. Anhand ubiquitärer Phänomene der Interviewinteraktion – Fragen, Antworten und die Selbstpositionierung von InterviewerInnen und Befragten – werden Praktiken des interaktiv-performativen Handelns im Interview dargestellt. Ihre Relevanz für die Interviewkonstitution und ihre Erkenntnispotenziale für die Interviewauswertung werden aufgezeigt. Es wird dafür plädiert, die interaktive Konstitutionsweise von Interviews empirisch zu erforschen und methodisch konsequent zu berücksichtigen. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1303131
If parental involvement in a child's education is generally viewed in positive terms, then it is important to understand what sorts of barriers might hinder it. This article reviews literature on culturally and linguistically diverse parental involvement in special education in the United States and Canada. In analyzing 20 articles published in…
Colson, Myron Jamal
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…
... 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...
Duncan, Laura; Comeau, Jinette; Wang, Li; Vitoroulis, Irene; Boyle, Michael H; Bennett, Kathryn
A better understanding of factors contributing to the observed variability in estimates of test-retest reliability in published studies on standardized diagnostic interviews (SDI) is needed. The objectives of this systematic review and meta-analysis were to estimate the pooled test-retest reliability for parent and youth assessments of seven common disorders, and to examine sources of between-study heterogeneity in reliability. Following a systematic review of the literature, multilevel random effects meta-analyses were used to analyse 202 reliability estimates (Cohen's kappa = ҡ) from 31 eligible studies and 5,369 assessments of 3,344 children and youth. Pooled reliability was moderate at ҡ = .58 (CI 95% 0.53-0.63) and between-study heterogeneity was substantial (Q = 2,063 (df = 201), p reliability varied across informants for specific types of psychiatric disorder (ҡ = .53-.69 for parent vs. ҡ = .39-.68 for youth) with estimates significantly higher for parents on attention deficit hyperactivity disorder, oppositional defiant disorder and the broad groupings of externalizing and any disorder. Reliability was also significantly higher in studies with indicators of poor or fair study methodology quality (sample size reliability of SDIs and the usefulness of these tools in both clinical and research contexts. Potential remedies include the introduction of standardized study and reporting requirements for reliability studies, and exploration of other approaches to assessing and classifying child and adolescent psychiatric disorder. © 2018 Association for Child and Adolescent Mental Health.
Broerse, J.E.W.; Zweekhorst, M.B.M.; Van Rensen, A.J.M.L.; De Haan, M.J.M.
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
Kragh, Helge Stjernholm
Interview done by Gustavo R. Rocha, in Transversal: International Journal for the Historiography of Science, ISSN 2526-2270......Interview done by Gustavo R. Rocha, in Transversal: International Journal for the Historiography of Science, ISSN 2526-2270...
Raussen, Martin; Skau, Christian
This interview was given by Professor John Milnor in connection to the Abel Prize 2011 ceremony. Originally the interview appeared in the September issue of the Newsletter of the European Mathematical Society......This interview was given by Professor John Milnor in connection to the Abel Prize 2011 ceremony. Originally the interview appeared in the September issue of the Newsletter of the European Mathematical Society...
Christiansen, Ask Vest
Kapitlet diskuterer hvordan interview kan bruges som metode i idrætsforskningen. Interview med elitecykelryttere inddrages som eksempel, med særligt fokus på det problematiske spørgsmål om doping.......Kapitlet diskuterer hvordan interview kan bruges som metode i idrætsforskningen. Interview med elitecykelryttere inddrages som eksempel, med særligt fokus på det problematiske spørgsmål om doping....
British painter Francis Bacon (1909-1992) was known for the eloquence with which he talked about his art. He was easy to talk to, and was interviewed countless times by numerous critics. However, when studying Bacon's paintings one soon comes across the published interviews with art critic and curator David Sylvester (1924-2001), who interviewed him as many as 18 times between 1962 and 1986. Art historian Sandra Kisters argues that Sylvester's interviews with Bacon are carefully constructed a...
Barroso, A.C.O.; Imakuma, K.; Reis, J.S.B. Jr.
courses within the USP grid. 3) The fact that the Brazilian Council for Scientific and Technological Development - CNPq has a range of research productivity fellowships for people who achieve a certain sustained level of publications. Depending on the researcher's classification, this mechanism includes a monthly income addition plus small funds for expenditures in traveling and laboratory consumables. Items a and b have caused many IPEN employees start to work towards graduate education at USP (IPEN). As they take most of the disciplines in subjects related to nuclear, which are taught by senior researchers / professors of IPEN, they end up performing their degree research work in fields that, most of the times, are related to the current work of their advisors at IPEN. Retired researchers usually keep the professor status and activities, probably because of their strong research group links, constructed over the years, but also because to have students is possibly the most important lever to keep up the indexes to maintain the CNPq productivity fellowship. This dynamic network is a powerful natural mechanism to transfer knowledge from retiring experts and also to disseminate nuclear knowledge, since IPEN has a diversified portfolio of disciplines that is also of interest to other students of the USP community. Based on the co-authorship of publications involving people from IPEN, collected annually from 2000 up to 2005, the social network evidenced by these data bases was analyzed. For the network 'photography' of each year a set of indicators were computed: a participation index of retirees in the publications of IPEN (no. of publications involving retirees / total no. of publications); a partnership index measuring the 'social capillarity' of the average collaborating retiree (no. of current workers that co-authored / no. of retired co-authors); a publication productivity index for the retired researchers; and some SN indexes, such as, diameter of the network
Nesvåg, Ragnar; Jönsson, Erik G; Bakken, Inger Johanne; Knudsen, Gun Peggy; Bjella, Thomas D; Reichborn-Kjennerud, Ted; Melle, Ingrid; Andreassen, Ole A
Utilization of diagnostic information from national patient registries rests on the quality of the registered diagnoses. We aimed to investigate the agreement and consistency of diagnoses of psychotic and bipolar disorders in the Norwegian Patient Registry (NPR) compared to structured interview-based diagnoses given as part of a clinical research project. Diagnostic data from NPR were obtained for the period 01.01.2008-31.12.2013 for all patients who had been included in the Thematically Organized Psychosis (TOP) study between 18.10.2002 and 01.09.2014 with a Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) diagnosis of schizophrenia (n = 537), delusional disorder (n = 48), schizoaffective disorder (n = 118) or bipolar disorder (n = 408). Diagnostic agreement between the primary DSM-IV diagnosis in TOP and the International Classification of Diseases, 10th revision (ICD-10) diagnoses in NPR was evaluated using Cohen's unweighted nominal kappa (κ). Diagnostic consistency was calculated as the proportion of all registered severe mental disorder diagnoses in NPR that were equivalent to the primary diagnosis given in the TOP study. The proportion of patients registered with the equivalent ICD-10 diagnosis as the primary DSM-IV diagnosis given in TOP was 84.2% for the schizophrenia group, 68.8% for the delusional disorder group, 76.3% for the schizoaffective disorder group, and 78.4% for the bipolar disorder group. Diagnostic agreement was good for schizophrenia (κ = 0.74) and bipolar disorder (κ = 0.72), fair for schizoaffective disorder (κ = 0.63), and poor for delusional disorder (κ = 0.39). Among patients with DSM-IV schizophrenia, 4.7% were diagnosed with ICD-10 bipolar disorder, and among patients with DSM-IV bipolar disorder, 2.5% were diagnosed with ICD-10 schizophrenia. Diagnostic consistency was 84.9% for schizophrenia, 59.1% for delusional disorder, 65.9% for schizoaffective disorder, and 91
... changes. Human gene transfer also raises scientific, medical, social, and ethical considerations that... currently reviewed under Section III-B-1, Experiments Involving the Cloning of Toxin Molecules with LD50 of...
Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian
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
Stahl, Bernd Carsten; Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian
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.
Wilhelmy, Annika; Kleinmann, Martin; Melchers, Klaus G; Götz, Martin
Prior research suggests that interviewers play an important role in representing their organization and in making the interview a pleasant experience for applicants. This study examined whether impression management used by interviewers (organization-enhancement and applicant-enhancement) is perceived by applicants, and how it influences applicants' attitudes, intentions, and emotions. Adopting a signaling perspective, this article argues that applicants' positive attitudes and intentions toward the organization increase if interviewers not only enhance the organization, but if the signals they sent (i.e., organization-enhancement) are actually received by the applicant. Similarly, applicants' positive emotions should increase if interviewers not only enhance the applicant, but if the signals they send (i.e., applicant-enhancement) are actually received by the applicant. A field study that involved video coding interviewers' impression management behavior during 153 selection interviews and pre- and post-interview applicant surveys showed that the signals sent by interviewers during the interview were received by applicants. In addition, applicants rated the organization's prestige and their own positive affect after the interview more positively when they perceived higher levels of organization-enhancement during the interview. Furthermore, applicants reported more positive affect and interview self-efficacy after the interview when they perceived higher levels of interviewer applicant-enhancement. We also found an indirect effect of interviewers' organization-enhancement on organizational prestige through applicants' perceptions of organization-enhancement as well as indirect effects of interviewers' applicant-enhancement on applicants' positive affect and interview self-efficacy through applicants' perceptions of applicant-enhancement. Our findings contribute to an integrated understanding of the effects of interviewer impression management and point out both
Full Text Available Prior research suggests that interviewers play an important role in representing their organization and in making the interview a pleasant experience for applicants. This study examined whether impression management used by interviewers (organization-enhancement and applicant-enhancement is perceived by applicants, and how it influences applicants' attitudes, intentions, and emotions. Adopting a signaling perspective, this article argues that applicants' positive attitudes and intentions toward the organization increase if interviewers not only enhance the organization, but if the signals they sent (i.e., organization-enhancement are actually received by the applicant. Similarly, applicants' positive emotions should increase if interviewers not only enhance the applicant, but if the signals they send (i.e., applicant-enhancement are actually received by the applicant. A field study that involved video coding interviewers' impression management behavior during 153 selection interviews and pre- and post-interview applicant surveys showed that the signals sent by interviewers during the interview were received by applicants. In addition, applicants rated the organization's prestige and their own positive affect after the interview more positively when they perceived higher levels of organization-enhancement during the interview. Furthermore, applicants reported more positive affect and interview self-efficacy after the interview when they perceived higher levels of interviewer applicant-enhancement. We also found an indirect effect of interviewers' organization-enhancement on organizational prestige through applicants' perceptions of organization-enhancement as well as indirect effects of interviewers' applicant-enhancement on applicants' positive affect and interview self-efficacy through applicants' perceptions of applicant-enhancement. Our findings contribute to an integrated understanding of the effects of interviewer impression management and
de Wit, M.P.T.; Abma, T.A.; Koelewijn-van Loon, M.S.; Collins, S.; Kirwan, J
Objective: To assess the inclusion of patients as international research partners in Outcome Measures in Rheumatology (OMERACT) conferences and how this has influenced the scope and conduct of outcomes research in rheumatology. Design: A thematic content analysis of OMERACT internal documents,
von Zerssen, D; Barthelmes, H; Pössl, J; Black, C; Garzynski, E; Wessel, E; Hecht, H
The Biographical Personality Interview (BPI) was applied to 179 subjects (158 psychiatric patients and 21 probands from the general population); 100 patients and 20 healthy controls served as a validation sample; the others had been interviewed during the training period or did not meet the inclusion criteria for the validation of the BPI. The acceptance of the interview was high, the inter-rater reliability of the ratings of premorbid personality structures ("types") varied between 0.81 and 0.88 per type. Concurrent validity of the typological constructs as assessed by means of the BPI was inferred from the intercorrelations of type scores and correlations of these scores with questionnaire data and proved to be adequate. Clinical validity of the assessment was indicated by statistically significant differences between diagnostic groups. Problems and further developments of the instrument and its application are discussed.
Peeling Data Structures and Algorithms: * Programming puzzles for interviews * Campus Preparation * Degree/Masters Course Preparation * Instructor’s * GATE Preparation * Big job hunters: Microsoft, Google, Amazon, Yahoo, Flip Kart, Adobe, IBM Labs, Citrix, Mentor Graphics, NetApp, Oracle, Webaroo, De-Shaw, Success Factors, Face book, McAfee and many more * Reference Manual for working people
Nisio, Sigeko; Uematsu, Eisui [Nihon Univ., College of Science and Technology, Funabashi, Chiba (Japan); Obayashi, Haruo [National Inst. for Fusion Science, Toki, Gifu (Japan)] [and others
An interview record with SEKIGUCHI Tadashi, Professor Emeritus at The University of Tokyo, on the nuclear fusion researches in Japan later half of 1980's is given. The major topics concerned are: activities of Science Council of Japan, the establishment of the Japan Society of Plasma Science and Nuclear Fusion Research, the history of establishing National Institute for Fusion Science, and effects of Grant-in-Aid for Scientific Research, and others. (author)
Zulu, Joseph M; Ali, Joseph; Hallez, Kristina; Kass, Nancy; Michelo, Charles; Hyder, Adnan A
An increase in post abortion care (PAC) research with adolescents, particularly in low- and middle-income countries, has brought to attention several associated research ethics challenges. In order to better understand the ethics context of PAC research with adolescents, we conducted a scoping review of published literature. Following a systematic search of PubMed, HINARI, and Google Scholar, we analysed articles meeting inclusion criteria to determine common themes across both the ethical challenges related to PAC research with adolescents and any available guidance on the identified challenges. The literature search identified an initial 3321 records of which 14 were included in analysis following screening. Several ethical challenges stem from abortion being a controversial, sensitive, and stigmatized topic in many settings. Ethical dilemmas experienced by researchers conducting adolescent PAC research included: difficulties in convincing local health providers to permit PAC research; challenges in recruiting and seeking consent due to sensitivity of the subject; effectively protecting confidentiality; managing negative effects of interventions; creating a non-prejudicial atmosphere for research; managing emotional issues among adolescents; and dealing with uncertainty regarding the role of researchers when observing unethical health care practices. Suggested strategies for addressing some of these challenges include: using several sources to recruit study participants, using research to facilitate dialogue on abortion, briefing health workers on any observed unethical practices after data collection, fostering a comprehensive understanding of contextual norms and values, selecting staff with experience working with study populations, and avoiding collection of personal identifiers. Addressing ethical challenges that researchers face when conducting PAC research with adolescents requires guidance at the individual, institutional, community, and international
The policy of the Australian Institute of Radiography with regards to the human subject irradiation is outlined. It is stated that members will not irradiate another individual, nor themselves, solely for the purposes of experimentation or research without gaining the prior approval of an institutional ethics committee. Where possible, researchers should consider the use of patient equivalent or human tissue equivalent phantoms. A short list of references has been compiled to assist members in designing research protocols which comply with the stated policy
Vieira Filho, X; Medeiros, J C; Szechtman, M [Centro de Pesquisas de Energia Eletrica (CEPEL), Rio de Janeiro, RJ (Brazil)
This paper presents the form which CEPEL (Brazilian Federal Research Center in Electric Energy) works for the Brazilian electric system, the interaction with associates, especially with ELETROBRAS (the Federal holding company in Brazil), the modern way of CEPEL operation and interactions with clients, the partnership in Research and Development, the CEPEL philosophy of transferring technology to its clients, and the cost-benefit analysis of Research and Development activities. (author) 2 refs., 4 figs., 1 tab.
Balmer, Claire; Griffiths, Frances; Dunn, Janet
To discuss the issues and challenges that may occur when using participant-produced photographs in nursing research. The place of visual representation in society is increasingly being recognized and there is a growing discussion on the advantages of implementing visual methods, such as photography, in health and illness research. Integrating photographs has much potential for both nurse researchers and participants but it remains a novel method of gathering qualitative data and many aspects have had little consideration in the nursing and medical literature. This paper presents a discussion of some of the issues that may arise when using photographs as data. It draws on examples of the insights and experiences we had when we asked study participants to produce photographs to complement their interviews designed to explore their experience of living after cancer. Discussion paper This paper is based on our own experiences and supported by literature and theory. Disseminating this research has prompted much interest from nurses and clinical staff. This paper should highlight some of the factors that may need to be addressed before employing such a novel method, thus ensuring the research process is positive and the outcome relevant for all parties. Examples are used here to illustrate practical, ethical and philosophical issues around the research plan, creating and interpreting photographic data, confidentiality and copyright and analysing and disseminating photographs produced for research. © 2015 John Wiley & Sons Ltd.
Sad, Süleyman Nihat; Konca, Ahmet Sami; Özer, Niyazi; Acar, Feride
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…
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…
Snow, R; Crocker, J C; Crowe, S
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
Peter Jenni, former spokesperson of the ATLAS Collaboration, discusses the challenges and satisfactions from his long-standing career in high-energy physics in this month’s PH Newsletter. Peter Jenni. Following a long career at CERN that dates back to 1970 (ranging from Summer Student to Fellow and to Staff), Peter Jenni recently retired after about 40 years marked by exciting discoveries (from the first two-photon production of eta-prime at SPEAR to the Higgs boson at the LHC). Peter was involved in the LHC from its very beginnings and was spokesperson of the ATLAS Collaboration until February 2009. Peter Jenni will continue working with ATLAS as a guest scientist with the Albert-Ludwigs-University Freiburg, and when he's not travelling he still spends most of his time in his office in Building 40, where he met with interviewer Panos Charitos. Panos Charitos: When did you first arrive to CERN? Peter Jenni: I first came to CERN as a Summer Student in ...
Full Text Available Setting health research priorities is a complex and value–driven process. The introduction of the Child Health and Nutrition Research Initiative (CHNRI method has made the process of setting research priorities more transparent and inclusive, but much of the process remains in the hands of funders and researchers, as described in the previous two papers in this series. However, the value systems of numerous other important stakeholders, particularly those on the receiving end of health research products, are very rarely addressed in any process of priority setting. Inclusion of a larger and more diverse group of stakeholders in the process would result in a better reflection of the system of values of the broader community, resulting in recommendations that are more legitimate and acceptable.
Martha L. Stiegman
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.
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
This Safety Series book should be considered as a technical guide aimed at the users of radioactive materials and the appropriate local and national authorities. It does not represent a single solution to the problems involved but rather draws the outlines of the plans and procedures that have to be developed in order to mitigate the consequences of an accident, should one occur. The preparation of local and national plans should follow the technical recommendations provided in this publication, with due consideration given to local factors which might vary from country to country (e.g. governmental systems, local legislation, quantities of radioactive materials involved). Several types of accidents are described, together with their possible radiological consequences. The basic principles of the protective measures that should be applied are discussed, and the principles of emergency planning and the measures needed to maintain preparedness for an operational response to an accident are outlined
torture Prohibition on slavery and forced labour Right to liberty and security Right to a fair trial No punishment without law Right to respect...NOT BE TOLERATED. IT IS BOTH A BREACH OF REGULATIONS AND UNETHICAL . UNAUTHORIZED RESEARCH MAY THEREFORE BE SUBJECT TO INVESTIGATION AND
Bogen begynder med en teoretisk funderet introduktion til det kvalitative interview gennem en skildring af de mange forskellige måder, hvorpå samtaler er blevet brugt til produktion af viden. Opmærksomheden henledes specielt på de komplementære positioner, der kendetegner det oplevelsesfokuserede...... interview (fænomenologiske positioner) og det sprogfokuserede interview (diskursorienterede positioner), som henholdsvis fokuserer på interviewsamtalen som rapporter (om interviewpersonens oplevelser) og redegørelser (foranlediget af interviewsituationen). De følgende kapitler omhandler forskellige måder...... forskningsresultater baseret på kvalitative interview....
Full Text Available In 2007 and 2008, the World Health Organization's Department for Child and Adolescent Health and Development commissioned five large research priority setting exercises using the CHNRI (Child Health and Nutrition Research Initiative method. The aim was to define research priorities related to the five major causes of child deaths for the period up to the year 2015. The selected causes were childhood pneumonia, diarrhoea, birth asphyxia, neonatal infections and preterm birth/low birth weight. The criteria used for prioritization in all five exercises were the “standard” CHNRI criteria: answerability, effectiveness, deliverability, potential for mortality burden reduction and the effect on equity. Having completed the exercises, the WHO officers were left with another question: how “fundable” were the identified priorities, i.e. how attractive were they to research funders?
Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A
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 app...
Ryan, Gemma Sinead
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.
Fisher, Celia B.
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…
... 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...
... 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...
Stephenson, Pam S.; Martsolf, Donna; Draucker, Claire Burke
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…
McCullagh, Marjorie C; Sanon, Marie-Anne; Cohen, Michael A
Challenges associated with recruiting and retaining community-based populations in research studies have been recognized yet remain of major concern for researchers. There is a need for exchange of recruitment and retention techniques that inform recruitment and retention strategies. Here, the authors discuss a variety of methods that were successful in exceeding target recruitment and retention goals in a randomized clinical trial of hearing protector use among farm operators. Recruitment and retention strategies were 1) based on a philosophy of mutually beneficial engagement in the research process, 2) culturally appropriate, 3) tailored to the unique needs of partnering agencies, and 4) developed and refined in a cyclical and iterative process. Sponsoring organizations are interested in cost-effective recruitment and retention strategies, particularly relating to culturally and ethnically diverse groups. These approaches may result in enhanced subject recruitment and retention, concomitant containment of study costs, and timely accomplishment of study aims. Copyright © 2014 Elsevier Inc. All rights reserved.
Ericsson, Jonas; Husmark, Teodor; Mathiesen, Christoffer; Sepahvand, Benjamin; Borck, Øyvind; Gunnarsson, Linda; Lydmark, Pär; Schröder, Elsebeth
To increase public awareness of theoretical materials physics, a small group of high school students is invited to participate actively in a current research projects at Chalmers University of Technology. The Chalmers research group explores methods for filtrating hazardous and otherwise unwanted molecules from drinking water, for example by adsorption in active carbon filters. In this project, the students use graphene as an idealized model for active carbon, and estimate the energy of adsorption of the methylbenzene toluene on graphene with the help of the atomic-scale calculational method density functional theory. In this process the students develop an insight into applied quantum physics, a topic usually not taught at this educational level, and gain some experience with a couple of state-of-the-art calculational tools in materials research.
A number of different techniques which range over several different aspects of materials research are covered in this volume. They are concerned with property evaluation of 4 0 K and below, surface characterization, coating techniques, techniques for the fabrication of composite materials, computer methods, data evaluation and analysis, statistical design of experiments and non-destructive test techniques. Topics covered in this part include internal friction measurements; nondestructive testing techniques; statistical design of experiments and regression analysis in metallurgical research; and measurement of surfaces of engineering materials
Byrd, Marquita L.; Robinson, Andrea
The interview is a special case of interpersonal communication. It is a communication event with a serious and predetermined purpose with the basic mode of communication being the asking and answering of questions. People are engaged in interviews throughout their lives from the employment setting to the counseling setting. This annotated…
Hass, Michael R.
Interviewing clients about their strengths is an important part of developing a complete understanding of their lives and has several advantages over simply focusing on problems and pathology. Prerequisites for skillfully interviewing for strengths include the communication skills that emerge from a stance of not knowing, developing a vocabulary…
Raussen, Martin; Skau, Christian
Mikhail Gromov is the recipient of the 2009 Abel Prize. The interview was made on May 18th, 2009, prior to the Abel Prize Celebration.......Mikhail Gromov is the recipient of the 2009 Abel Prize. The interview was made on May 18th, 2009, prior to the Abel Prize Celebration....
Rossmann, Allan; Wasserstein, Ron
Ron Wasserstein is Executive Director of the American Statistical Association (ASA). He previously served as Vice-President for Academic Affairs and Professor of Statistics at Washburn University. This interview took place via email on January 21- February 24, 2014. Topics covered in this interview are as follows: 1) Beginnings, 2) Teaching…
Rossman, Allan; Kaplan, Danny
Danny Kaplan is DeWitt Wallace Professor of Mathematics and Computer Science at Macalester College. He received Macalester's Excellence in teaching Award in 2006 and the CAUSE/USCOTS Lifetime Achievement Award in 2017. This interview took place via email on March 4-June 17, 2017. Topics covered in the interview include: (1) the current state of…
Presents an interview with Peggy Papp, a faculty member at the Ackerman Institute for the Family, where she is director of the Depression in Context Project. The Interview focuses on Papp's journey to becoming a marriage and family therapist and her role as a leader in field of feminist therapy. (GCP)
Frankel, M. S.
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.
Ewing, Maureen; Camara, Wayne J.; Millsap, Roger E.; Milewski, Glenn B.
AP Potential™ is a data-driven tool offered by the College Board that uses scores from the PSAT/NMSQT® to identify students who have the potential to succeed in Advanced Placement Program® (AP®) courses (College Board, 2007). Research showing a moderate-to-strong correlation between PSAT/NMSQT scores and AP Exam scores serves as the basis for this…
Consulting with children is widely recognised as an essential element in building understanding about children's lives. From a children's rights perspective, it is also a legal requirement on professionals working with children. However, translating the rhetoric into research and practice is still evolving. Previous studies report on working with…
Kravale-Paulina, Marite; Olehnovica, Eridiana
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…
Troischt, Parker; Koopmann, Rebecca A.; Haynes, Martha P.; Higdon, Sarah; Balonek, Thomas J.; Cannon, John M.; Coble, Kimberly A.; Craig, David; Durbala, Adriana; Finn, Rose; Hoffman, G. Lyle; Kornreich, David A.; Lebron, Mayra E.; Crone-Odekon, Mary; O'Donoghue, Aileen A.; Olowin, Ronald Paul; Pantoja, Carmen; Rosenberg, Jessica L.; Venkatesan, Aparna; Wilcots, Eric M.; Alfalfa Team
The NSF-sponsored Undergraduate ALFALFA (Arecibo Legacy Fast ALFA) Team (UAT) is a consortium of 19 institutions founded to promote undergraduate research and faculty development within the extragalactic ALFALFA HI blind survey project and follow-up programs. The collaborative nature of the UAT allows faculty and students from a wide range of public and private colleges and especially those with small astronomy programs to develop scholarly collaborations. Components of the program include an annual undergraduate workshop at Arecibo Observatory, observing runs at Arecibo, computer infrastructure, summer and academic year research projects, and dissemination at national meetings (e.g., Alfvin et al., Martens et al., Sanders et al., this meeting). Through this model, faculty and students are learning how science is accomplished in a large collaboration while contributing to the scientific goals of a major legacy survey. In the 7 years of the program, 23 faculty and more than 220 undergraduate students have participated at a significant level. 40% of them have been women and members of underrepresented groups. Faculty, many of whom were new to the collaboration and had expertise in other fields, contribute their diverse sets of skills to ALFALFA related projects via observing, data reduction, collaborative research, and research with students. 142 undergraduate students have attended the annual workshops at Arecibo Observatory, interacting with faculty, graduate students, their peers, and Arecibo staff in lectures, group activities, tours, and observing runs. Team faculty have supervised 131 summer research projects and 94 academic year (e.g., senior thesis) projects. 62 students have traveled to Arecibo Observatory for observing runs and 46 have presented their results at national meetings. 93% of alumni are attending graduate school and/or pursuing a career in STEM. Half of those pursuing graduate degrees in Physics or Astronomy are women. This work has been
Iyer, Sharat P; Pancake, Laura S; Dandino, Elizabeth S; Wells, Kenneth B
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.
José Aparecido de
Full Text Available This essay analyses the asymmetrical relationship between the time of scientific research and the time of the different segments interested in their results, focusing mainly on necessity to establish technical consensus about the fields of science that require rigorous investigations and texts. In the last years, civil society sectors - mainly scientific journalism, legislative power, and public opinion - has shown growing interest in participating of the decision making process that regulates science routes. In this study, we analyzed the decision making process of the Biosafety Law, as it allows research with embryonic stem cells in Brazil. The results allow us to conclude that this asymmetrical relationship between the different times (of science, scientific disclosure, public opinion, and public power contribute to the maturing of the dialog on scientific policies, as well as to the establishment of a consensus concerning science routes, which aims at the democratization of scientific work.
Memon, A; Wark, L; Holley, A; Bull, R; Koehnken, G
This paper addresses two methodological and theoretical questions relating to the Cognitive Interview (CI), which previous research has found to increase witness recall in interviews. (1) What are the effects of the CI mnemonic techniques when communication techniques are held constant? (2) How do trained interviewers compare with untrained interviewers? In this study, witnesses (college students) viewed a short film clip of a shooting and were questioned by interviewers (research assistants) trained in conducting the CI or a Structured Interview (SI)--similar to the CI except for the "cognitive" components--or by untrained interviewers (UI). The CI and SI groups recalled significantly more correct information compared to the UI group. However they also reported more errors and confabulated details. Theoretical and practical implications of the results are discussed in terms of precisely identifying the CI facilitatory effects and consequent good practice in the forensic setting.
White, Geoffry D.
A course option in abnormal psychology involves students in interviewing and observing the activities of individuals in the off-campus community who are concerned with some aspect of abnormal psychology. The technique generates student interest in the field when they interview people about topics such as drug abuse, transsexualism, and abuse of…
Neuschwander, Murielle; In-Albon, Tina; Meyer, Andrea H; Schneider, Silvia
The objective of this study was to investigate the satisfaction and acceptance of a structured diagnostic interview in clinical practice and in a research setting. Using the Structured Diagnostic Interview for Mental Disorders in Children and Adolescents (Kinder-DIPS), 28 certified interviewers conducted 202 interviews (115 with parents, 87 with children). After each interview, children, parents, and interviewers completed a questionnaire assessing the overall satisfaction (0 = not at all satisfied to 100 = totally satisfied) and acceptance (0 = completely disagree to 3 = completely agree) with the interview. Satisfaction ratings were highly positive, all means >82. The mean of the overall acceptance for children was 2.43 (standard deviation [SD] = 0.41), 2.54 (SD = 0.33) of the parents, 2.30 (SD = 0.43) of the children's interviewers, and 2.46 (SD = 0.32) of the parents' interviewers. Using separate univariate regression models, significant predictors for higher satisfaction and acceptance with the interview are higher children's Global Assessment of Functioning, fewer number of children's diagnoses, shorter duration of the interview, a research setting, female sex of the interviewer, and older age of the interviewer. Results indicate that structured diagnostic interviews are highly accepted by children, parents, and interviewers. Importantly, this is true for different treatment settings. Copyright © 2017 John Wiley & Sons, Ltd.
Energy wood production in short rotation. Opportunities and problems in their implementation. An analysis involving expert interviews; Energieholzproduktion im Kurzumtrieb. Chancen und Probleme bei ihrer Umsetzung. Eine Analyse unter Einbeziehung von Experteninterviews
The thesis has to the content the latest stand and the possibilities of further development of wood energy production by short rotation coppice (SRC). After analyzing the development of this relatively new option of the management of fast growing tree species and their possibilities, the associated legal bases are being analyzed. In addition to related agricultural land, other options will be considered to establish land (forest, fallow land). Weaknesses in delimitation and promotion, especially at country level are discussed. There follows a detailed consideration of the economical and ecological contemplation of wood agricultural cultivation, as well as the basics of the management including the raw material supply. The analyzed results serve as a basis for running interviews with experts of the subject fast growing tree species. The results of the interviews show that SRC mainly as an opportunity for long-term wood energy supply and establishment of regional circuits is seen with emphasis on the agricultural sector, but in this context there are lots of deficits on side of the management technology, basic conditions and other establishment barriers that we are confront with. After overcoming the remaining start-up difficulties however the chances are good to expand the energy wood production in short rotation forestry in an economically viable, ecologically profitable and socially acceptable way and therewith contribute to the diversification of agricultural production and relief of multifunctional forest management. (orig.)
Gallagher, Cathal T; McDonald, Lisa J; McCormack, Niamh P
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.
Blackburn, Steven; McLachlan, Sarah; Jowett, Sue; Kinghorn, Philip; Gill, Paramjit; Higginbottom, Adele; Rhodes, Carol; Stevenson, Fiona; Jinks, Clare
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
Ferrieri, R.A.; Wolf, A.P.
Over the years, a large body of information has amassed which has helped to clarify the authors understanding of the complex chemistry occurring within chemical systems immediately following a nuclear reaction. With the increased knowledge of how reactive nuclides generated by such processes react chemically, it became increasingly apparent that the translational or recoil energy imparted to such species was not always the driving force behind some of the unusual chemistry seen in these systems. In many instances, the state of electronic excitation was found to strongly affect their chemistry. In others, the concomitant radiation chemistry often altered initial chemical states. Even so, with just a general understanding of how these effects work in unison, it has been possible in many instances to predict radiolabel distributions and yields in molecules. This ability has had an enormous impact in other fields utilizing radiotracers in research. This presentation will highlight specific examples in basic hot atom research which have focused on these problems, and describe general applications to other disciplines using radiotracers
Rosen, Rachel; Heatherly, S.; McLauglin, M.; Lorimer, D.
The National Science Foundation funded "Pulsar Search Collaboratory” project is a collaboration between the National Radio Astronomy Observatory (NRAO) in Green Bank, WV and West Virginia University aimed at provoking interest in Science-Technology-Engineering-Math (STEM) careers and increasing scientific and information technology literacy among high-school students within the state and region. Over the initial three-year phase of this program, 60 high-school teachers at schools throughout region and over 300 students will be involved in the search for new pulsars and transient objects by analyzing over 30 TB of data collected by the Green Bank Telescope in 2007. Although training is provided to teachers and student leaders via a summer workshop, additional students may join the program, learning from their peers how to conduct the data analysis. We are now in the second year of the PSC and we present a progress report from the first year of the PSC. We will summarize our approaches to implementing this challenging project, including the use of online tools to communicate with and sustain interest among the student teams, and the development of a unique graphical database through which students access and analyze pulsar plots. We will present the student results including one astronomical discovery as well as statistics on the plots that students have analyzed, including distribution among schools, number of known pulsars found, and RFI detection. Finally we will present evaluation results and lessons learned from the first year of the PSC. These include results from pre/post testing of teachers and students that show changes in student interest in STEM careers resulting from the PSC, and statistics on student participation.
Matausek, M.; Marinkovic, N.
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)
U.S. Department of Health & Human Services — The National Health Interview Survey (NHIS) is the principal source of information on the health of the civilian noninstitutionalized population of the United States...
Campbell, Rebecca; Adams, Adrienne E.
There is growing interest in understanding how different research methods are perceived by victims of violence and what survivors will reveal to researchers (termed "meta-research" or "meta-studies"). The purpose of this project was to conduct a qualitative meta-study on why rape survivors chose to participate in community-based, face-to-face…
Riggs, Elisha; Yelland, Jane; Szwarc, Josef; Casey, Sue; Chesters, Donna; Duell-Piening, Philippa; Wahidi, Sayed; Fouladi, Fatema; Brown, Stephanie
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.
Full Text Available This issue of Designs for Learning features an interview with professor Staffan Selander, who has contributed in important ways to the shaping of the field we talk about as “designs for learning”. In the interview that follows we hope to give some further insights regarding interests, influences and experiences that have formed a background to the development of his theoretical approach to issues concerning education and learning.
Raussen, Martin; Skau, Christian
S. R. S. Varadhan is the recipient of the 2007 Abel Prize of the Norwegian Academy of Science and Letters. On May 21, 2007, prior to the Abel Prize celebration in Oslo, Varadhan was interviewed by Martin Raussen of Aalborg University and Christian Skau of the Norwegian University of Science...... and Technology. This interview originally appeared in the September 2007 issue of the European Mathematical Society Newsletter....
Sharkey, Siobhan; Jones, Ray; Smithson, Janet; Hewis, Elaine; Emmens, Tobit; Ford, Tamsin; Owens, Christabel
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.
Gaston Meskens; Erik Laes; Gilbert Eggermont
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)
Rogers, Morwenna; Bethel, Alison; Boddy, Kate
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.
Meskens, Gaston; Laes, Erik; Eggermont, Gilbert
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)
Hawamdeh, Sana; Raigangar, Veena
To explore some of the main methodological challenges faced by interviewers in Arab settings, particularly during interviews with psychiatric nurses. Interviews are a tool used commonly in qualitative research. However, the cultural norms and practices of interviewees must be considered to ensure that an appropriate interviewing style is used, a good interviewee-interviewer relationship formed and consent for participation obtained sensitively. A study to explore the nature of psychiatric nurses' practices that used unstructured interviews. This is a methodology paper that discusses a personal experience of addressing many challenges that are specific to qualitative interviewing in Arab settings, supported by literature on the topic. Suggestions for improving the interview process to make it more culturally sensitive are provided and recommendations for future research are made. Openness, flexibility and a reflexive approach by the researcher can help manage challenges in Arab settings. Researchers should allow themselves to understand the cultural elements of a population to adapt interviewing methods with the aim of generating high quality qualitative research.
Małgorzata K. Szerla
Full Text Available Contextualisation is the process of identifying specific factors of a patient’s life situation, which is focused on individualised care. In the light of reference books, contextualisation is an integral part of therapy with an active participation of the patient and/or his/her carers. Among many factors that constitute the functioning of a person, family and socio-material situation, access to professional health care, and the ability to exercise self-care are major contextual factors of the patient’s health situation. The purpose of this article is to draw attention to the fact that the limiting oneself exclusively to algorithms as procedures based on the best evidence (best evidence medical research – BEMR may raise the specific danger of underestimating the variability of individual responses of the human body under the influence of factors forming a personal context. The phenomenon of contextualisation in the treatment of an individual patient is still not adequately disseminated, although it is an important element in the decision-making process, with proven impact on the efficiency and quality of care and satisfaction of a patient.
Collins, Karen; Boote, Jonathan; Ardron, David; Gath, Jacqui; Green, Tracy; Ahmedzai, Sam H
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.
Woolfall, Kerry; Frith, Lucy; Gamble, Carrol; Gilbert, Ruth; Mok, Quen; Young, Bridget
Alternatives to prospective informed consent to enable children with life-threatening conditions to be entered into trials of emergency treatments are needed. Across Europe, a process called deferred consent has been developed as an alternative. Little is known about the views and experiences of those with first-hand experience of this controversial consent process. To inform how consent is sought for future paediatric critical care trials, we explored the views and experiences of parents and practitioners involved in the CATheter infections in CHildren (CATCH) trial, which allowed for deferred consent in certain circumstances. Mixed method survey, interview and focus group study. 275 parents completed a questionnaire; 20 families participated in an interview (18 mothers, 5 fathers). 17 CATCH practitioners participated in one of four focus groups (10 nurses, 3 doctors and 4 clinical trial unit staff). 12 UK children's hospitals. Some parents were momentarily shocked or angered to discover that their child had or could have been entered into CATCH without their prior consent. Although these feelings resolved after the reasons why consent needed to be deferred were explained and that the CATCH interventions were already used in clinical care. Prior to seeking deferred consent for the first few times, CATCH practitioners were apprehensive, although their feelings abated with experience of talking to parents about CATCH. Parents reported that their decisions about their child's participation in the trial had been voluntary. However, mistiming the deferred consent discussion had caused distress for some. Practitioners and parents supported the use of deferred consent in CATCH and in future trials of interventions already used in clinical care. Our study provides evidence to support the use of deferred consent in paediatric emergency medicine; it also indicates the crucial importance of practitioner communication and appropriate timing of deferred consent discussions
Woolfall, Kerry; Frith, Lucy; Gamble, Carrol; Gilbert, Ruth; Mok, Quen; Young, Bridget
Objective Alternatives to prospective informed consent to enable children with life-threatening conditions to be entered into trials of emergency treatments are needed. Across Europe, a process called deferred consent has been developed as an alternative. Little is known about the views and experiences of those with first-hand experience of this controversial consent process. To inform how consent is sought for future paediatric critical care trials, we explored the views and experiences of parents and practitioners involved in the CATheter infections in CHildren (CATCH) trial, which allowed for deferred consent in certain circumstances. Design Mixed method survey, interview and focus group study. Participants 275 parents completed a questionnaire; 20 families participated in an interview (18 mothers, 5 fathers). 17 CATCH practitioners participated in one of four focus groups (10 nurses, 3 doctors and 4 clinical trial unit staff). Setting 12 UK children's hospitals. Results Some parents were momentarily shocked or angered to discover that their child had or could have been entered into CATCH without their prior consent. Although these feelings resolved after the reasons why consent needed to be deferred were explained and that the CATCH interventions were already used in clinical care. Prior to seeking deferred consent for the first few times, CATCH practitioners were apprehensive, although their feelings abated with experience of talking to parents about CATCH. Parents reported that their decisions about their child's participation in the trial had been voluntary. However, mistiming the deferred consent discussion had caused distress for some. Practitioners and parents supported the use of deferred consent in CATCH and in future trials of interventions already used in clinical care. Conclusions Our study provides evidence to support the use of deferred consent in paediatric emergency medicine; it also indicates the crucial importance of practitioner communication
Uneke, Chigozie Jesse; Ezeoha, Abel Ebeh; Ndukwe, Chinwendu Daniel; Oyibo, Patrick Gold; Onwe, Friday; Aulakh, Bhupinder Kaur
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.
if and how a communication skills course should be included in the undergraduate curriculum; possible education strategies to improve dental communication between students and patients; and involvement of faculty in future communication education. Data from the interview guided the development of the questionnaire ...
Oct 21, 2012 ... There was an association (P<0.05) between intestinal parasitic infection and place of residence, agro-ecological location, family size, water source, .... This was a cross-sectional survey that involved interviewing of the HIV/AIDS patients using structured a questionnaire and also laboratory analysis.
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
Where do evaluators find resources on ethics and ethical practice? This article highlights a relatively new online resource, a centerpiece project of the National Center for Professional and Research Ethics (NCPRE), which brings together information on best practices in ethics in research, academia, and business in an online portal and center. It…
Townsend, Anne; Cox, Susan M
Background Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emer...