Rereading assent in critical literacy research with young children

2016 ◽  
Vol 18 (3) ◽  
pp. 396-427 ◽  
Author(s):  
Rebecca Rogers ◽  
Meredith Labadie
Keyword(s):  
Young Children ◽  
Critical Literacy ◽  
Meaning Making ◽  
Research Process ◽  
Institutional Review Boards ◽  
Institutional Review ◽  
Ethical Concept ◽  
Educative Process ◽  
The Right ◽  
Literacy Research

Literacy researchers often include young children in the research process. Yet discussions about the complexities of gaining and keeping assent are often missing in research reports. In this paper, we report on our attempts to make the assent process, a typical requirement for Institutional Review Boards, an educative experience for children in a critical literacy Kindergarten classroom. We asked: When assent is treated as a text to be read, revisited, interpreted and negotiated, what meanings are made by young children? We designed research lessons and collected artefacts of students’ learning, including interviews. Our analysis traced children’s developing recognition and critical analysis of concepts such as voluntary participation, understanding of procedures, confidentiality, benefits and risks of the study, and the right to ask questions. We found that when assent is treated as an educative process, particularly in the context of critical literacy education, young children learn and make meaning about their rights and responsibilities as participants. We present evidence of meaning-making, transfer and voluntariness of each ethical concept. Implications for literacy research with young children are discussed.

scholarly journals Researchers’ perspectives on the role of study partners in dementia research

2014 ◽  
Vol 26 (10) ◽  
pp. 1649-1657 ◽  
Author(s):  
Betty S. Black ◽  
Holly Taylor ◽  
Peter V. Rabins ◽  
Jason Karlawish
Keyword(s):  
Academic Research ◽  
Research Participation ◽  
Research Process ◽  
Institutional Review Boards ◽  
Enrollment Decisions ◽  
Caregiver Support ◽  
Institutional Review ◽  
Dementia Research ◽  
Role Responsibilities

ABSTRACTBackground:Study partners for dementia research participants are vital to the research process, but little is known about their role, responsibilities, and experiences. Study partners are usually family members or friends – often the patient's informal caregiver – who are knowledgeable about and usually accompany the participant to study visits. This study examines researchers’ perspectives on the role of study partners in dementia research.Methods:Qualitative data collection and analytic methods were used. Semi-structured individual interviews with principal investigators, study coordinators, and research nurses (i.e. researchers; n = 17) at two academic research sites were recorded, transcribed, and content analyzed to identify themes in the data.Results:According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply with a study's protocol, and provide comfort and encouragement for the patient to engage in and complete a study. Researchers describe ideal qualities of study partners as being able to provide reliable information, being dependable and adherent to the protocol, and not expecting a benefit. They also report that study partners may face both practical and emotional challenges during research participation. However, researchers believe that study partners derive dementia-related education, caregiver support, and satisfaction from their involvement in research.Conclusions:Investigators, potential study partners, and institutional review boards should be aware of study partners’ research responsibilities, challenges, and their interests as caregivers.

Implementation of the flipped residency research model to enhance residency research training

2019 ◽  
Vol 76 (9) ◽  
pp. 608-612 ◽  
Author(s):  
Kathryn A Morbitzer ◽  
Kamakshi V Rao ◽  
Denise H Rhoney ◽  
Ashley L Pappas ◽  
Emily A Durr ◽  
...  
Keyword(s):  
Research Training ◽  
Pharmacy Practice ◽  
Research Process ◽  
Practice Research ◽  
Institutional Review Boards ◽  
Research Model ◽  
High Quality Research ◽  
Research Activities ◽  
Institutional Review ◽  
The Impact

Abstract Purpose The attainment of fundamental research skills to create and disseminate new knowledge is imperative for the advancement of pharmacy practice. Research training is an important component of postgraduate residency training; however, the traditional model of performing residency research has several limitations that have hindered the ability of residents to complete high-quality research projects. Therefore, our institution developed and implemented the flipped residency research model with the 2013–2014 pharmacy practice residency class. Summary The flipped residency research model modifies the research timeline to better align research activities with residents’ abilities at specific time points during the year. In the 4 years following implementation of the flipped residency research model, our institution found improvements in a number of areas pertaining to the research process compared with an evaluation of the 7 years prior to implementation. A decrease in the number of reviews required from institutional review boards was observed, resulting in improved institutional review board efficiency. The flipped residency research model also addressed limitations surrounding manuscript development and submission, as demonstrated by an improved publication rate. Additionally, residents who participated in the flipped residency research model self-reported increased comfort with research-related abilities associated with study design, implementation, manuscript development and submission, and biostatistics. Conclusion The modified research timeline of the flipped residency research model better aligns research activities with resident experiences and abilities. This realignment has translated to demonstrable impact in the success of residency projects and dissemination of results. Research is needed to investigate the impact of the flipped residency research model on longer term scholarly success.

scholarly journals Understanding the perceived impact and value of research advocacy initiatives for colorectal cancer

2020 ◽  
Author(s):  
Reese Garcia ◽  
Andrea J. Dwyer ◽  
Sharyn Worrall ◽  
Anjelica Q. Davis ◽  
Nancy Roach
Keyword(s):  
Colorectal Cancer ◽  
Training Program ◽  
Research Process ◽  
Institutional Review Boards ◽  
Delivery Of Care ◽  
Advocacy Training ◽  
Patient Voice ◽  
Institutional Review ◽  
Patient Values ◽  
Advocacy Program

Abstract Background Research advocacy utilizes patient insight to progress research, ensuring that patient values remain a priority. It is integral to inform activities such as designing clinical trials, providing perspectives on Institutional Review Boards (IRB’s), and reviewing research grants. As a leader in colorectal cancer (CRC) advocacy, Fight Colorectal Cancer (Fight CRC) developed a formal research advocacy training program in 2015 with the goal of preparing CRC advocates to become the most educated patient voice at the research table. Methods To understand the effectiveness of a research advocacy training program and subsequently research advocacy as a whole, Fight CRC distributed online questionnaires between December 2018 and July 2019 to oncology professionals who had previously worked with Fight CRC research advocates, including physicians, program directors, and consumer review administrators. A questionnaire was also disseminated to Fight CRC research advocates. Results In total, twenty-six stakeholders participated and 89% agreed/strongly agreed that there was value in having the patient voice in research. Respondents reported that advocates provide a perspective that would not otherwise be considered in the research process. Fourteen research advocates participated in the survey and the majority indicated that the research advocacy program equipped them to sit on panels and provide effective insight. All research advocates believed that their patient insight is taken seriously by the research community. Conclusion In order for research advocacy to have a significant impact and a high perceived value on research, it is important to establish an effective training program to support adult learning. In addition, it is necessary for researchers to understand how advocates can positively influence their work, and how the scientific community can engage with and leverage research advocacy to its fullest potential to improve scientific research, delivery of care, and quality of life for patients with cancer.

Navigating Ethical Issues in Photovoice: Balancing the Principles of Community-Based Participatory Research Ethics with Institutional Review Board Requirements

2021 ◽  
pp. 155626462110327
Author(s):  
Lauren E. McDonald ◽  
Moshoula Capous-Desyllas
Keyword(s):  
Participatory Research ◽  
Cultural Context ◽  
Ethical Issues ◽  
Community Based Participatory Research ◽  
Research Process ◽  
Critical Discussion ◽  
Institutional Review Boards ◽  
Collaborative Relationships ◽  
Community Based ◽  
Institutional Review

This article reflects on ethical issues that arose during the course of two different evaluation projects that used photovoice method to engage with marginalized populations. The evaluations serve as case studies for a critical discussion about potential barriers that researchers may face when employing photovoice method while trying to balance the principles of community-based participatory research with the requirements of Institutional Review Boards. We reflect on ethical dilemmas related to the meaning of photography within the cultural context of participants’ lives, the compensation of participants as collaborators, and the representation and dissemination of participant photos. We conclude by examining how researchers may approach ethical requirements without compromising the important collaborative relationships central to photovoice method. We additionally call on researchers to engage with ethics review committees to create a new “participant–researcher” category with its own set of protocols that recognizes the nuanced role members of disenfranchised communities play in the research process.

Expert Testimony by Ethicists: What Should be the Norm?

2005 ◽  
Vol 33 (2) ◽  
pp. 198-221 ◽  
Author(s):  
Edward J. Imwinkelried
Keyword(s):  
Human Subjects ◽  
Ethics Committees ◽  
Scholarly Activity ◽  
Institutional Review Boards ◽  
Quarter Century ◽  
Safeguard Subjects ◽  
Institutional Review ◽  
Short Period ◽  
Bioethical Issues ◽  
The Right

The term, “bioethics” was coined in 1970 by American cancerologist V. R. Potter. In the few decades since, the field of bioethics has emerged as an important discipline. The field has attained a remarkable degree of public recognition in a relatively short period of time. The “right to die” cases such as In re Quinlan placed bioethical issues on the front pages. Although the discipline is of recent vintage, the past quarter century has witnessed a flurry of scholarly activity, creating a substantial body of bioethical literature. Moreover, the bioethics movement has manifested itself in institutional expressions. Universities and medical schools have added courses in bioethics to their curricula. In 1974, federal legislation and regulations mandated that federal grantees conducting human subjects research establish institutional review boards to safeguard subjects’ welfare, and even absent a legislative mandate numerous hospitals created ethics committees. Centers and institutes, devoted exclusively to the study of bioethical issues, have been founded.

On the Track of C/overt Research: Lessons From Taking Ethnographic Ethics to the Extreme

2017 ◽  
Vol 24 (7) ◽  
pp. 453-463 ◽  
Author(s):  
Tereza Virtová ◽  
Tereza Stöckelová ◽  
Helena Krásná
Keyword(s):  
Informed Consent ◽  
Research Ethics ◽  
Ethical Dilemmas ◽  
Research Participant ◽  
Research Process ◽  
Institutional Review Boards ◽  
Power Dynamics ◽  
Institutional Review ◽  
Growing Body ◽  
Anthropological Research

Despite the growing body of literature that critically assesses the ambiguous impacts of institutional review boards (IRBs) on anthropological research, the key standards on which the IRB evaluations are based often remain unquestioned. By exposing the genealogy of an undercover research in which the authors participated as ethnographer, supervisor, and research participant, this article problematizes some of these standards and addresses the issues of power dynamics in research, informed consent, and anonymization in published work. It argues that rather than addressing genuine ethical dilemmas, IRB standards and the ethical fiction of informed consent mainly protect researchers from having to openly face the uncertainties of fieldwork. As an alternative, the authors put forth the notion of c/overt research, which perceives any research as processual and, in effect, becoming overt only during the research process itself. As such, it forces researchers to cultivate sensitivity to research ethics.

News on the Right

2019 ◽  
Keyword(s):  
Quantitative Research ◽  
Meaning Making ◽  
Rhetorical Analysis ◽  
The United States ◽  
Right Wing ◽  
Quantitative Research Methods ◽  
Fox News ◽  
National Review ◽  
Interdisciplinary Field ◽  
The Right

This volume seeks to initiate a new interdisciplinary field of scholarly research focused on the study of right-wing media and conservative news. To date, the study of conservative or right-wing media has proceeded unevenly, cross-cutting several traditional disciplines and subfields, with little continuity or citational overlap. This book posits a new multifaceted object of analysis—conservative news cultures—designed to promote concerted interdisciplinary investigation into the consistent practices or patterns of meaning making that emerge between and among the sites of production, circulation, and consumption of conservative news. With contributors from the fields of journalism studies, media and communication studies, cultural studies, history, political science, and sociology, the book models the capacious field it seeks to promote. Its contributors draw upon a variety of qualitative and quantitative research methods—from archival analysis to regression analysis of survey data to rhetorical analysis—to elucidate case studies focused on conservative news cultures in the United States and the United Kingdom. From the National Review to Fox News, from the National Rifle Association to Brexit, from media policy to liberal media bias, this book is designed as an introduction to right-wing media and an opening salvo in the interdisciplinary field of conservative news studies.

scholarly journals Barriers to Development of an App for Improving Staff-Family Communication at Israeli Geriatric Facilities

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 192-193
Author(s):  
Rinat Cohen ◽  
Gal Maydan ◽  
Shai Brill ◽  
Jiska Cohen-Mansfield
Keyword(s):  
Mobile App ◽  
Institutional Review Boards ◽  
Staff Members ◽  
Institutional Review ◽  
Implementation Planning ◽  
Institutional Adoption ◽  
Communication Needs ◽  
The University ◽  
And Control ◽  
To Receive

Abstract Family caregivers (FCs) of institutionalized noncommunicative older persons reported multiple unmet communication needs focusing on the need to receive reliable and regular updates on the patient’s condition. We have developed a mobile app for improving communication between FCs and healthcare professionals (HPs), based on 152 interviews with FCs and 13 discussion groups with HPs from four Israeli geriatric facilities. Both parties participated in app planning, tailoring it to their needs and abilities. App use implementation encountered major obstacles including the bureaucratic process concerning signing contracts between the university and software development firms, which hindered the process for a full year; data security department required disproportionate security levels that interfered with user experience and delayed the development process; the study’s definition varied across different ethics/Helsinki committees (Institutional Review Boards; IRBs), which led to different demands, e.g., insurance for medical clinical trials although no drugs or medical device were involved; lack of cooperation by mid-level staff members despite the institutional adoption of the app project; low utilization by HPs resulted in FCs not receiving timely responses. Despite these and other obstacles, we tested app use for 15 months in one facility in a pre-post-design with intervention and control groups, and we have since begun testing it in another facility. FCs who had used the app had positive feedback and wished to continue using it. App use optimization requires implementation planning, assimilating changes in each facility’s work procedures and HP’s engagement and motivation and thus depends on institutional procedures and politics.

Sign in / Sign up

Export Citation Format

Share Document