Value Of Research Participation Research Articles

Between arts-based methods and hermeneutics: Navigating the ethics of participation in research with vulnerable children

Children are underrepresented in research, mainly because of the ethical issues that their participation raises. This is even more true when it comes to marginalized migrant children. For the sake of justice, researchers must think about methods for including children and their families and reflect on the ethics of knowledge building in these contexts. This article returns to the hermeneutics of Hans Georg Gadamer as an interpretation practice which values understanding rather than explanation. It also focuses on the concept of play which can be truth revealing and which is understood as the very being of artistic practices. This allows us to first emphasize the compatibility of hermeneutics and art-based approaches, and their ethical value when it comes to bringing clinical and research issues together. This article highlights that methods based on art and play itself are ethical in the way that they can both provide well-being and reveal a truth that is as useful to the participant as it is to the researcher. This article also addresses how the researcher, in the process of understanding, is “at play” in the research situation which places him in an active role. The play allows a participatory truth to emerge, a truth resulting from a dialogue. This leads us to recognize the ethical value of participation in research with children.

1855. Understanding Cytomegalovirus (CMV) Symptom Management, Quality of Life, and Care Coordination in Transplant Recipients Through Patient and Care Partner (CP) Experiences

Abstract Background Transplant recipients with CMV infection have a high risk of complications and mortality. This study aimed to better understand patient and CP knowledge of post-transplant CMV and identify how it can be improved. Methods The study included 2 research phases (Fig 1). We report results from Phase 2 (September 2022–March 2023), which included an educational webinar with a pre- and post-webinar assessment comprising 4 questions on the risk, symptoms, treatment, and complications of CMV; participants (pts) self-reported their confidence rating pre- and post-webinar. Transplant recipients and CPs also completed a quantitative survey on CMV management and patient/CP burden. Pts were recruited via the PatientsLikeMe (PLM) website, email, or social media. Results The webinar was completed by 33 pts. There was a total of 86 and 121 correct responses to the 4 pre- and post-survey questions, respectively, indicating a significant improvement in understanding of CMV post-webinar as compared with before (p< 0.05; t-test statistic). Almost half (n=16 [48%]) of pts reported feeling “not at all confident” in recognizing CMV symptoms post-transplant pre-webinar; post-webinar, this was 0 pts. Twenty-eight transplant recipients (27 solid organ transplant; 1 hematopoietic cell transplant) and 1 CP completed the quantitative survey. Half of recipients received a CMV diagnosis post-transplant and 16/28 reported having no awareness of their or their donor’s CMV status prior to transplant. Most (27/28) recipients reported a positive experience with their care team post-transplant. Half of recipients set goals with their care team or were provided resources to track them post-transplant. Recipients reported CMV medication changes and challenges with treatment (Table 1). Patients primarily contacted their surgeon about CMV and sought information on the internet. Conclusion Although transplant recipients reported positive experiences with their healthcare team, the post-transplant care journey could be improved by better educating patients about CMV and CMV management. Aggregate-level learnings from the study with be shared on the PLM platform to reinforce the value of participation in research. Funding: Collaborative research study; primary funding from Takeda Pharmaceuticals U.S.A., Inc. Disclosures Deepshikha Singh, MPH, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Mary C. Burke, MHA, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Subhara Raveendran, PhD, Ascendis Pharma: Employee|PatientsLikeMe: Ownership Interest Erlyn Rachelle Macarayan, PhD, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Maisha Razzaque, MS, PatientsLikeMe: Employee|PatientsLikeMe: Ownership Interest Genovefa Papanicolaou, MD, Allovir: Advisor/Consultant|Amplyx: Advisor/Consultant|Astellas: Advisor/Consultant|Cidara: Advisor/Consultant|CSL Behring: Advisor/Consultant|DSMC: Advisor/Consultant|Merck: Advisor/Consultant|Merck: Grant/Research Support|Merck: institutional research support for clinical trials|MSD: Advisor/Consultant|Octapharma: Advisor/Consultant|Partners Rx: Advisor/Consultant|Shire/Takeda: institutional research support for clinical trials|Symbio: Advisor/Consultant|Symbio: Advisor/Consultant|Takeda: Advisor/Consultant|Vera Pharma: Advisor/Consultant Macey L. Levan, PhD, Takeda Pharmaceuticals: Advisor/Consultant Maggie McCue, MS, RD, Takeda Pharmaceuticals U.S.A., Inc.: Employee Megan Gower, PharmD, Takeda Pharmaceuticals U.S.A., Inc.: Employee|Takeda Pharmaceuticals U.S.A., Inc.: Ownership Interest Daniele K. Gelone, PharmD, Abbott Laboratories: Ownership Interest|Ionis Pharmaceuticals: Ownership Interest|Johnson & Johnson: Ownership Interest|NovoNordisk: Ownership Interest|Pfizer: Ownership Interest|Regenxbio: Ownership Interest|Takeda Pharmaceuticals U.S.A., Inc.: Employee|Takeda Pharmaceuticals U.S.A., Inc.: Ownership Interest|Vertex Pharmaceuticals: Ownership Interest

Undergraduate Research Pools in Psychology Departments: Prevalence and Practices

Background Limited research exists on the prevalence of undergraduate research participant pools (URPs) in psychology departments or guidelines surrounding their use. Objective The aim of the current study was to replicate older studies on the prevalence of URPs in the United States and the procedures and guidelines related to those requirements. Method Psychology department chairs in the U.S. were recruited by email and via the Association of Heads of Departments of Psychology listserv. A total of 604 department chairs participated in the online study by completing a series of assessments related to URP use in their department. Results Most 4-year institutions (67.7%), but few 2-year institutions (6.3%) had a URP. Of the 4-year institutions with a URP, 83.7% had a research requirement for students enrolled in their introduction to psychology courses. Most departments (84.0%) did not assess the educational value of research participation. Conclusion Most psychology departments have a URP, but few examined the educational value of research participation. Teaching Implications Psychology departments should identify learning objectives for research participation, assess outcomes, and identify practices that optimize achieving those objectives. Research requirements should be consistent with ethical principles and empirical evidence of learning.

Community Defined Measures of Success and Inclusive Research in Peacebuilding

Participatory research is a tool for community inclusion in peace and development programs. Participation is a popularly promoted concept, but rarely implemented in research. Search for Common Ground (Search), an international peacebuilding NGO, reflects in this paper on four past projects to assess if and how participatory research brings an added value to peacebuilding programming. The projects were selected from across Africa, and each applied one of the following participatory research methods: Youth Led Research, Outcome Harvesting, and an adapted Social Network Analysis. The findings are based on a literature review, review of M&E planning, monitoring, and final evaluation of each of the four projects, and seven semi‐structured Key Informant Interviews (KIIs) with M&E and Project Management staff. Our research questions were, Do participatory research processes change metrics of success? How is success understood under these processes? What lessons can be drawn from these processes? and, Which best practices emerge that differ from what already exists? Traditional research, where community members are research subjects instead of partners, limits the perspectives that feed the bodies of knowledge influencing program design and definitions of success. Participatory research creates opportunities to track minority voices, which the inclusion of and responses to fundamentally change programs' definitions of success. A primary value of participatory research is in how it escapes the rigidity of formal processes, which are often donor‐driven and not responsive to changing needs on the ground. The examined project in West Africa has project indicators that intentionally respond to youth researchers' findings on worst forms of violence in their community. The resulting definitions came directly from the targeted community, and were unique from any indicators that program staff would have developed (one example: including consistent hunger as a form of violence). Another added value of participation in research is the increases in sustained community involvement in other aspects of programming. Sustained involvement may also include increased engagement with other institutions, such as local government; the effect is even more powerful when projects explicitly build the use of participatory research into the project objectives. Participation is also recognized as valuable in itself. Participatory research creates opportunities to track minority voices, the inclusion of which and responses to fundamentally change definitions of success. A key lesson learned is that the success and growth of participatory research requires a receptive donor or institutional environment. This area should continue to be explored, to determine how community‐based research can be used to advocate for high‐level change. Theories of Change (TOCs) are identified as a potential path for promoting adaptive learning and participatory research. Tracking the changes to the TOC and the corresponding changes to a project over time create space for new definitions of project success that value adaptability and real‐time relevance, beyond the rigidity and limits of donor‐imposed learning systems. Finally, what makes this approach unique from current common practice is its shift to reconsider who can speak with authority on issues relevant to peacebuilding research. The consequent adaptive learning better respond to the unique position of peacebuilding research as a set of tools applied in inherently uncertain and complex contexts.

Exploring the value of involving experts-by-experience in social work research: experiences from Slovenia and the UK

ABSTRACTThe evidence base for the methodological validity of conducting participatory research is becoming established. This article reviews the experiences of two researchers undertaking Ph.D. studies in Slovenia and UK, respectively, and considers the value of involving service users and carers in social work research. The Slovenian research involved user-researchers who developed research tools and undertook qualitative research. The first author explores the co-researchers’ impact on the research process and its outcomes, identifying both individual and collective empowerment of the co-researchers. The English study involved people from diverse backgrounds, who developed a recovery training programme for carers of people with schizophrenia. The second author describes how the steering group, and the carers who participated in the programme were impacted by the research process and experienced a sense of empowerment and how they influenced the development of new knowledge through the reflexive cycle. The authors draw out the commonalities and differences in our research that add to the existing evidence base supporting the development of participatory inquiry. We conclude by affirming the value of user participation in research in leading to the empowerment of users, the development of new research perspectives, and in contributing to theory in social work research and practice.

Applying Equity Theory to Students’ Perceptions of Research Participation Requirements

Human subject pools have been a valuable resource to universities conducting research with student participants. However, the costs and benefits to student participants must be carefully weighed by students, researchers, and institutional review board administrators in order to avoid coercion. Participant perceptions are pivotal in deciding whether coercion is a concern. In the current study, students answered an anonymous survey after completing 3 hr of research-related activities. In order to gauge the relative value of research participation in participants’ eyes, we computed perceived benefits–costs ratios for research participation and for class attendance in a sample of university students. Results indicated that participants thought attendance and research requirements were generally positive experiences even after considering the costs. However, the benefits of research participation decreased with an increase in required research hours. Suggestions on how to increase student benefits and decrease costs of research requirements are provided.

Assessing the Perceived Value of Research Participation

Undergraduate psychology majors are encouraged to engage in research to improve understanding of research methods and increase research skills. This study examines the potential of volunteering as a research participant to increase student perceptions of knowledge and interest in research. Undergraduate students completed a survey regarding the value of research participation. Results showed that across all classifications (i.e., freshmen, sophomore, junior, and senior), students reported higher levels of both understanding research and interest in research after research participation. Given these results, we suggest that including research participation as a part of the psychology undergraduate curriculum can serve as an effective hands-on experience for all undergraduate students.

Strengthening the Educational Value of Undergraduate Participation in Research as Part of a Psychology Department Subject Pool

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

A Video Introduction to Psychology: Enhancing Research Interest and Participation

To assess the extent to which a video about psychological research would heighten introductory psychology students' interest and participation in research studies, we created a video about ongoing research at our university, the value of research participation, and course requirements for the research experience. Instructors in 4 courses (N = 471 students) verbally explained the research requirement and distributed a document detailing alternatives for completing it. In 2 of these courses, students also saw the video. Results indicated that students who viewed the video reported greater interest in research and completed more research participation hours than did students who did not view the video. We discuss the potential advantages of standardized, noncoercive procedures to encourage student participation in research.

"Academic value of research participation by undergraduates": Comment on Coulter and on Daniel.

"Academic value of research participation by undergraduates": Comment on Coulter and on Daniel.

"Academic value of research participation by undergraduates": Comment on Coulter.

"Academic value of research participation by undergraduates": Comment on Coulter.

Academic value of research participation by undergraduates.

Academic value of research participation by undergraduates.

The value of participation in research as a component in the education of doctors for the medical, graduate, and postgraduate student.

The value of participation in research as a component in the education of doctors for the medical, graduate, and postgraduate student.

The value of participation in research in the continuing education of the practising doctor.

The value of participation in research in the continuing education of the practising doctor.

Value of research for the graduate and post-graduate medical student.

There is no need to document the value of medical research as a major factor in the constantly improving well-being of mankind. It could be convincingly contended that our knowledge of health and our control of disease have progressed farther in the last 50 or 60 years than in all the preceding countless ages of man. Furthermore, it is unnecessary to declare the value of participation in research for a medical student who anticipates a career of either full-time investigation or part-time clinical research supplementing the practice of medicine. The methods and tools of research and the nature and conduct of investigation must be learned early. A physician who has done no investigation by the time he has finished his postgraduate residency training is unlikely to make significant research contributions in his subsequent career. It is self-evident that research must continue to increase our understanding of man in health and