Involving Research Participants Research Articles

APRD: action partnership research design: reimagining the role of the user in library and information science research

PurposeResponding to the continuing separation of participants and researchers in LIS participatory research, a new methodology is proposed: action partnership research design (APRD). It is asserted that APRD can mitigate or remove the hierarchical structures often inherent in the research process, thus allowing for equal contribution from all.Design/methodology/approachBuilding on the bonded design (BD) methodology and informed by a scoping literature review conducted by the same authors, APRD is a human-centered research approach with the goal of empowering and valuing community partnerships. APRD originates from research investigating the use of participatory design methods to foster collaboration between two potentially disparate groups, firstly with adult researchers/designers and elementary school children, and secondly with university faculty and IT professionals.FindingsTo achieve this goal, in addition to BD techniques, APRD draws inspiration from elements of indigenous and decolonization research methodologies, particularly those with an emphasis on destabilizing power hierarchies and involving research participants as full partners.Originality/value APRD, which emerged from findings from previous participatory design studies, especially those of BD, is based on the premise of partnership, recognizing that each member of a design team, whether researcher or participant/user, has unique expertise to contribute. By considering participants/users as full research partners, APRD aims to flatten the hierarchies exhibited in some LIS participatory research methodologies, where participants are treated more like research subjects than partners.

Management Curriculum and Intelligence Emotional in Improving the Quality of Learning Elementary school

Good curriculum management will create a conducive learning environment. At the same time, emotional intelligence will help individuals manage their emotions and interact well with others. Researchers concentrated on re-analyzing previous studies published in journals such as Google Scholar, Eric, and Science Direct, Emerald, Sage Journals. 15 Scopus-indexed articles from various countries worldwide have been used as sources of information related to research. Next, researchers used qualitative methods by manually conducting thematic analysis to make research findings relevant to previous studies. Based on a literature review by previous researchers, the results show that "the relationship between curriculum management and emotional intelligence in improving the quality of learning in elementary schools" is still limited. No previous research is relevant to the research objectives to be studied. Therefore, it is recommended that researchers conduct this investigation more in-depth and comprehensively by involving research participants.

A Study on English Equivalents of Cantonese Sentence-Final Particles: Zaa3 and Ze1 as an Example

This study explores English equivalents of the Cantonese sentence-final particles (SFPs) zaa3 and ze1 by utilizing Natural Semantic Metalanguage (NSM) explications to analyze their semantic components and roles and conducting a phonetic experiment to find the English intonational equivalents. While zaa3 and ze1 both convey the meaning of “only” or “just” in Cantonese, this research reveals that they differ in connotations, are contextually specific, and their implied meanings cannot be adequately captured through direct translation into English. To address this, the study employs NSM explications as the analytical framework and a phonetic experiment involving research participants of two Cantonese native speakers and one English native speaker is conducted to identify the English intonational equivalents of these Cantonese SFPs. The study aims to answer two research questions: (i) What are the NSM explications of the Cantonese sentence-final particles zaa3 and ze1? (ii) Do either of the two Cantonese SFPs possess English intonational equivalents, and if so, what are they? Zaa3 often conveys a sense of complaint or dissatisfaction, suggesting insufficient quantity, while ze1 typically conveys modesty or humility, implying an unremarkable or ordinary quantity. An NSM explication for zaa3 involves the Cantonese semantic primes M4 DO1, SEONG2 DO1 DI1, which translate to “NOT MORE, WANT MORE” in English equivalents. On the other hand, an NSM explication for ze1 comprises M4 DO1, M4 SEONG2 JAN4 GOK3 DAK1 DO1 in Cantonese semantic primes, corresponding to “NOT MORE, DON’T WANT SOMEONE FEEL MUCH~MANY” in English equivalents. These nuanced implied meanings cannot be effectively conveyed through direct translation alone, requiring consideration of intonation patterns in English. The phonetic experiment conducted using Praat software clearly demonstrates distinct pitch contours when participants read English sentences translated from Cantonese sentences containing zaa3 and ze1, respectively. The findings indicate that the English equivalents of the Cantonese SFP zaa3 encompass the meanings of “only” or “just”, accompanied by a falling pitch contour when speakers read the corresponding English translation. Conversely, the English equivalents of the Cantonese SFP ze1 entail the meanings of “only” or “just”, along with the highest pitch point occurring at the end of the sentence in the English translation. In conclusion, this research sheds light on the English equivalents of the Cantonese SFPs zaa3 and ze1, highlighting their divergent connotations and nuanced implied meanings. The study emphasizes the importance of considering intonation patterns to accurately convey these nuances in English translations.

Research Ethics: The Bane of the unethical researcher.

Every human research creates generalizable information which is an integral part of health improvement & understanding of disease. It also causes some risk or inconvenience to research participants. Codes of conduct for physicians have existed since ancient period. Declaration of Helsinki ICMR, Human subjects’ protection; Animal care guidelines etc provide a policy for conduct of research involving research participants in India. The Why & the How in research are vital questions. The ‘Why’ is very clear to define as improvement of public health. What matters more is the ‘How’: while performing it is necessary to adhere to research ethics for promotion of knowledge, truth and avoidance of errors. Research being team work, involves principles of team work such as trust, mutual respect, even handedness, and accountability. Upholding confidentiality, data sharing policies, guidelines of authorship, peer review policies, copyright and patenting policy promotes security of intellectual property and gives confidence for collaborations. Ethical research outlines standard guidelines for institutions and professionals for their behavior towards the specified goals and helps to develop the trust of community further promoting funding.

Involving research participants in a pan-European research initiative: the EPAD participant panel experience

BackgroundIncluding participants in patient and public involvement activities is increasingly acknowledged as a key pillar of successful research activity. Such activities can influence recruitment and retention, as well as researcher experience and contribute to decision making in research studies. However, there are few established methodologies of how to set up and manage participant involvement activities. Further, there is little discussion of how to do so when dealing with collaborative projects that run across countries and operate in multiple linguistic and regulatory contexts.MethodsIn this paper we describe the set-up, running and experiences of the EPAD participant panel. The EPAD study was a pan-European cohort study with the aim to understand risks for developing Alzheimer’s disease and build a readiness cohort for Phase 2 clinical trials. Due to the longitudinal nature of this study, combined with the enrolment of healthy volunteers and those with mild cognitive impairments, the EPAD team highlighted participant involvement as crucial to the success of this project. The EPAD project employed a nested model, with local panels meeting in England, France, Scotland, Spain and The Netherlands, and feeding into a central study panel. The local panels were governed by terms of reference which were adaptable to local needs.ResultsThe impact of the panels has been widespread, and varies from feedback on documentation, to supporting with design of media materials and representation of the project at national and international meetings.ConclusionsThe EPAD panels have contributed to the success of the project and the model established is easily transferable to other disease areas investigating healthy or at-risk populations.

Innovations in research dissemination: research participants sharing stories at a conference.

The dissemination of findings is a crucial part of research. There are many forms of dissemination and audiences differ depending on the focus of the dissemination. To present using a recent experience as an example an overview of the benefits to vulnerable research participants of participating in the dissemination of research, as well as potential issues that may occur. There are many benefits to involving research participants in conference presentations. However, it is crucial to provide appropriate support and debriefing, and to put plans in place to ensure they are safe. Multifaceted dissemination strategies are needed to meet the various audiences for research. Involving research participants can provide unique perspectives. However, careful planning is required to produce the best possible outcomes. Researchers preparing to disseminate research findings with research participants in a conference setting can use this article to assist with the recognition of benefits and challenges that may arise.

Ethical Dilemmas Associated With Profit-Driven Research in Developing Countries

The phenomenal growth of the global pharmaceutical sales, which exceeded $US one trillion in revenues in 2014 alone, has resulted in the growing ethical concerns associated with the need for the unprecedented search for human test subjects to participate in clinical drug trials - particularly in middle and low-income countries – and concerns about possible exploitation. While this expansion has provided access to vital medical resources that would have otherwise been unattainable for this population - this outsourcing also created problems which may be termed as exploitation – such as faulty trials at times, and manipulation of data about the benefits and risks of the drugs being tested on the populations in developing countries. Although the United States and European countries have sponsored much biomedical research in developing countries, they considered their work done once the trials concluded, and this has been criticized and termed as “safari research,” – which is a form of exploitation of developing countries and their populations from which research subjects are recruited. These trials do not address the needs of the developing countries and contribute to the exploitation of some of the most “vulnerable” populations. It is unethical to enter a country, set up facilities for research then leave with the healthcare personnel and equipment after giving hope to its people of some form of benefit. Several historical events have led to the awareness of the need for protecting research subjects. There is a need for a better understanding of what constitutes as exploitations, to ensure researchers make ethical decisions with planning and implementation of research involving research participants. The paper looks at the ethical issues and their importance in international research, and the double standards that are of growing concern in profit-driven research in low-income countries by developed sponsor countries, while also making recommendations for preventing exploitations.

Improving Documentation of Nutritional Care in A Nursing Home: An Evaluation of A Participatory Action Research Project.

Background: Nursing home patients at nutritional risk are often not identified, nor given entitled nutritional treatment. One approach proven suitable to facilitate change in clinical practise is participatory action research (PAR). This is a process which involves research participants in reflection, planning, action, observation, assessing and re-planning, targeted to bring about change. The aim of the present study was to evaluate whether a PAR project resulted in improved documentation of nutritional care in a nursing home ward. Method and sample: A quantitative evaluation. Documentation of the nutritional information was collected from medical records of residents in a nursing home ward at baseline and five months into the project period. Results: Increased documentation of individual nutritional treatment measures was found from baseline to the follow-up. The number of residents with a nutritional care plan (NCP) also increased significantly. On the other hand, the study identified a significant decrease in the proportion of residents with documented weight and nutritional status. Conclusion: The evaluation found several improvements in the documentation of nutritional care practice in the nursing home ward as a result of the PAR project, indicating that a PAR approach is suitable to bring about change in practice.

Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes.

Despite the growing importance of public and patient involvement in biomedical research, comparatively little attention has been paid to the important role of research participants themselves. Our aim in this paper is to explore the impact research participant involvement has within the PREVENT and the European Prevention of Alzheimer's Dementia (EPAD) projects. In this paper, we report the experiences of involving research participants as collaborators in prospective cohort studies exploring early changes in the brain as pathways towards and risks for dementia. We use minutes and feedback from members of the panel and steering committee to understand the experience and impact on the study. We describe the aims and structure of the participant panel established within the PREVENT Dementia study and highlight its contributions to the organisation, conduct and future of the study. Key areas of contribution identified include recruitment, inclusion of additional sub-studies, understanding the participant experience and contributing to the future of the study. We then describe how the PREVENT Dementia panel forms the basis for participant involvement within EPAD project.

Getting On With Field Research Using Participant Deconstruction

This article adds to the repertoire of field research methods through developing the technique of “participant deconstruction.” This technique involves research participants challenging and reinterpreting organizational texts through the application of orienting, disorienting, and reorienting deconstructive questions. We show how participant deconstruction complements existing strategies for “getting on” with field research—cultivating relationships, developing outsider knowledge, and mobilizing insider knowledge—by facilitating research participants’ questioning and challenging of organizational texts and thus opening up alternative latent understandings, illuminating concealed meanings, supporting reflexivity for participants and researchers, and suggesting fruitful lines of inquiry. We illustrate the application of the technique with examples drawn from health care research projects. Through gathering further practitioner feedback from a variety of alternative contexts, we go on to demonstrate the potential application of participant deconstruction in a range of field contexts, by different types of practitioners undertaking deconstructive readings of a wide variety of organizational texts. We also offer suggestions for further research to extend the technique.

Researching mobile practices: participant reflection and audio-recording in Repeat Question Diaries

The Repeat Question Diary method involves research participants audio-recording many answers to a single question. This article investigates some of the features of the method that are relevant to the study of mobile practices. Particularly, the method encourages participant reflection and the paper argues that this can facilitate the study of mobile practices through enabling participants to notice and analyse previously taken-for-granted, pre-conscious, or corporeal aspects of their practices. The paper also explores the use of audio-recording in diary research and argues that audio-diaries can facilitate participant expression, particularly of emotions, and can avoid the stifling effects of self-editing in written diaries.

Understanding the importance of therapeutic relationships in the development of self-management behaviours during cancer rehabilitation: a qualitative research protocol

IntroductionCancer is a growing health, social and economic problem. 1 in 3 people in the UK will develop cancer in their lifetime. With survival rates rising to over 50%, the...

Using cognitive interviews to enhance measurement in empirical bioethics: Developing a measure of the preventive misconception in biomedical HIV prevention trials

Background: We describe our use of cognitive interviews in developing a measure of “preventive misconception” to demonstrate the importance of this approach to researchers developing surveys in empirical bioethics. The preventive misconception involves research participants' false beliefs about a prevention trial, including beliefs that the interventions being tested will certainly be effective. Methods: We developed and refined a measure of the preventive misconception using qualitative interviews that focused on cognitive testing of proposed survey items with HIV prevention trial participants. Results: Two main problems emerged during initial interviews. First, the phrase “reduce your risk,” used to elicit beliefs about risk reduction from the use of study medications, was interpreted as relating to a reduction of risky behaviors. Second, the phrase “participating in this study,” intended to elicit beliefs about trial group assignment, was interpreted as relating to personal behavior changes associated with study participation. Additional interviews using a revised measure were no longer problematic in these ways, and participants felt the response options were appropriate for conveying their answers. Conclusions: These findings underscore the importance of cognitive testing in developing surveys for empirical bioethics.

Whose voice are we hearing, really?

This article, written from the position of someone who has lived experience of therapy for ‘psychosis’ and an interest in participation, explores the degree to which qualitative research truly conveys the voice and perspective of research participants. By exploring five papers focused on diverse experiences of psychotherapy, from the perspective of clients and therapists, it draws out some of the tensions inherent in making interpretations and connections within research papers and the impact this may have on the quality of any conclusions drawn. Finally, it makes some suggestions for ways of meaningfully involving research participants in the process and argues for an ongoing dialogue to prevent our own assumptions and theoretical frameworks from obscuring the importance of this involvement to improve the quality of future research.

Researching literacy in context: using video analysis to explore school literacies

AbstractThis article addresses how methodological approaches relying on video can be included in literacy research to capture changing literacies. In addition to arguing why literacy is best studied in context, we provide empirical examples of how small, head‐mounted video cameras have been used in two different research projects that share a common aim: understanding the complex ways in which literacy is a part of school practices. The complexity of literacy practices taking place in classrooms, where students draw on a number of texts for a variety of purposes and different literacy discourses co‐exist in the same setting, poses a serious challenge for those who wish to study literacy in educational settings. The methodology presented in this article is our attempt to meet this challenge. Our approach relies on using video equipment in innovative ways to capture multiple perspectives, involving research participants in the data collection process and the early stages of analysis, and analysing video data with digital coding software. These methods are combined to obtain a more systematic and detailed insight into the contexts in which literacy takes place.

Challenges in the use of social networking sites to trace potential research participants

This paper reports on a number of challenges faced in tracing contributors to research projects that were originally conducted many decades previously. The need to trace contributors in this way arises in projects which focus on involving research participants in previous studies who have not been maintained on a database, or with whom the research team has lost contact since the initial study. The paper focuses, in particular, on the use of social networking sites to trace contributors and reflects on the issues raised when using these tools for this purpose. It reports on a study which attempted to trace, using the social networking sites Facebook and Friends Reunited, contributors to surveys of childhood play conducted by Iona and Peter Opie in the 1950s and 1960s. Success in using the sites for this purpose was limited and it is suggested that in cohorts which include generations and communities that might use new technologies less frequently than others, additional methods to track down participants may be required.

The Effects of Demand Characteristics on Research Participant Behaviours in Non-Laboratory Settings: A Systematic Review

BackgroundThe concept of demand characteristics, which involves research participants being aware of what the researcher is investigating, is well known and widely used within psychology, particularly in laboratory-based studies. Studies of this phenomenon may make a useful contribution to broader consideration of the effects of taking part in research on participant behaviour. This systematic review seeks to summarise data from studies of the effects of demand characteristics on participant behaviours in non-laboratory settings.Methodology/Principal FindingsElectronic databases were searched to identify eligible studies. These had to be purposely designed to evaluate possible effects of demand characteristics on at least one behavioural outcome under the autonomous control of the participants and use longitudinal study designs. Only 7 studies were included, 6 providing observational data and 1 experimental study, with 5 studies involving examination of possible effects on health behaviours. Although studies provided some evidence of effects of demand characteristics on participant behaviour, heterogeneous operationalisation of the construct, the limited number of studies and poor quality of study designs made synthesis and interpretation of study findings challenging.Conclusions/SignificanceAlthough widely accepted as important in psychology, there have been few dedicated studies of the effects of demand characteristics on research participant behaviours outside laboratory settings. This body of literature does not currently contribute to the wider study of research participation effects. A systematic review of data from laboratory-based studies is needed, as are high-quality primary studies in non-laboratory settings. We suggest that unqualified use of the term demand characteristics should be abandoned.

Internet research and informed consent: An ethical model for using archived emails

Ethical conduct involving research participants rests on the Belmont principles of autonomy, beneficence and justice. Novel methods present new challenges in safeguarding these principles. The increasing use of data obtained from the internet in health research raises important questions regarding obligations to people posting personal information online. Ethical issues warrant special consideration since guidelines are only beginning to emerge, placing greater onus on the researcher’s discretion. This paper presents a model (a synthesis of the work of Eysenbach and Till (2001) and Kraut et al (2004)) to assist in decision-making regarding obtaining or waiving informed consent when using archived emails from websites. For illustrative purposes, the application of the model to a PhD project is described.

Communication deficiencies in research and monitoring by ethics committees

To assess the range of issues that arise for researchers, research participants and ethics committee members in the setting of a hospital-based research environment and to develop a tool that could be used to assist in the process of monitoring. A qualitative phase comprising focus group sessions and interviews involving research participants, researchers and ethics committee members of a public teaching hospital and a quantitative phase involving distribution of a questionnaire to research participants and researchers. The data from the qualitative phase were used to assist with the development of the quantitative instrument. Descriptive statistics were derived to describe the various attitudes and practices with respect to the conduct of research. The qualitative study identified issues concerning monitoring procedures and the quality of communication between researchers and study participants. The quantitative analysis showed that parts of the Explanatory Statement (also known as the Participant Information Statement) were incomprehensible to 21% of research participants; the Explanatory Statement was considered too long by 34% of researchers; 6% of researchers believed that explicit consent was not always necessary; of the participants who were out of pocket for attending a study, 53% were offered compensation; and 44% of research participants were unaware of the existence of the ethics committee. In addition, 12% of researchers felt that the quality of monitoring should be improved. Improvements are necessary in the communication between ethics committees and researchers and research participants, and there is a need for more effective monitoring by ethics committees of research practices. The questionnaire designed for this study could be applied in a prospective manner as a useful tool for monitoring the conduct of research.

Putting “Participatory” into Participatory Forms of Action Research

Although there has been a rise in calls for participatory forms of research, there is little literature on the challenges of involving research participants in all phases of the research process. Actively involving research participants requires new strategies, new researcher and research-participant roles, and consideration of a number of ethical dilemmas. We analyzed the strategies employed and challenges encountered based on our experiences conducting feminist participatory action research with a marginalized population and a variety of community partners over 3 years. Five phases of the research process were considered including developing the research questions, building trust, collecting data, analyzing data, and communicating the results for action. Our goals were to demonstrate the relevance of a participatory approach to sport management research, while at the same time acknowledging some of the realities of engaging in this type of research.