Experiences Of Research Participants Research Articles

Actions Speak Louder than Words: Stop Talking-Do! The Role of Social Psychology to turn Talkers into Doers to Nourish Organizational Behavior

Effective and capable people are in high demand amongst businesses and educational establishments. Companies are not getting the best out of their people. It appears that there is a gap between what people are saying they are going to do and what they actually do. This research, based on a combination of what is already known about the subject matter under investigation and the practical experiences of research participants, investigated how this organizational behavior gap could be closed and what the potential benefits would be for both individuals and companies. The main focus of this research was to identify effective solutions how talkers could become doers and how talkers would benefit from adopting and applying the suggested recommendations how changes in attitude/behaviors and routines could lead to improved action-based capabilities. The outcome of this research suggests that the contributions made by this research can be measured through appropriate Key Performance Indicators (KPIs) to measure and demonstrate the effectiveness of considered performance improvements. It is suggested that the contributions from this research can be applied universally provided that cultural diversity is taken into consideration.

How to be open

This study builds a model of open video game development, an emerging user-centered design practice where a developer publicly releases an incomplete game and iterate on it while gathering feedback from the player community. It argues that open development is fundamentally a communication and user experience practice characterized by a commitment to access, transparency, and feedback. Ultimately, it shows open development as a practice where game developers are consciously designing a compelling experience of participation in user research.

Traversing hills and valleys: Exploring doing, being, becoming and belonging experiences in teaching and studying occupation

ABSTRACTResearch findings in occupational science and occupational therapy education can be mutually informing, yet this mutual benefit is seldom explored. A secondary analysis of data from a study of how occupation is addressed in US occupational therapy curricula explored this question: what latent meanings within education research data are pertinent to occupational science? Data were selected that richly described the tandem occupations of teaching and learning where the focus was occupation-related content. Three processes adopted from Ricœurian hermeneutic interpretive analysis—explanation, understanding, and appropriation—revealed the occupational experiences of doing, being, becoming and belonging as a dynamic web among instructors and students who participated in the study and the researchers. Further, the analytic process united the occupational experiences of research participants and researchers, and prompted researchers to reflect on and engage emotionally with their teaching and other occupations, facilitating appropriation of the research for their classroom practices.

What do young people with rheumatic conditions in the UK think about research involvement? A qualitative study

BackgroundInvolving people of all ages in health research is now widely advocated. To date, no studies have explored whether and how young people with chronic rheumatic conditions want to be involved in influencing health research. This study aimed to explore amongst young people with rheumatic conditions, 1) their experiences of research participation and involvement 2) their beliefs about research involvement and 3) beliefs about how young people’s involvement should be organized in the future.MethodsFocus groups discussions with young people aged 11–24 years with rheumatic conditions across the UK. Data was analysed using a qualitative Framework approach.ResultsThirteen focus groups were held involving 63 participants (45 F: 18 M, mean age 16, range 10 to 24 years) across the UK. All believed that young people had a right to be involved in influencing research and to be consulted by researchers. However, experience of research involvement varied greatly. For many, the current project was the first time they had been involved. Amongst those with experience of research involvement, awareness of what they had been involved in and why was often low. Those who had previously participated in research appeared more positive and confident about influencing research in the future. However, all felt that there were limited opportunities for them to be both research participants and to get involved in research as public contributors.ConclusionsThese findings suggest that there is an on-going need to both increase awareness of research involvement and participation of young people in rheumatology as well as amongst young people themselves.

Harmful or Helpful? A Systematic Review of How Those Bereaved Through Suicide Experience Research Participation.

Many of the bereaved through suicide are interested in participating in postvention studies. However, there is a contradiction between the positive experiences of research participation and concerns raised by ethical boards. To review studies on the experience of research participation by those bereaved through suicide, including initial contact with the study and its short- and long-term impacts. Systematic searches in Embase, Medline, PsycINFO, as well as Google Scholar identified 12 papers reporting on 11 studies. The majority (73-100%) of study participants evaluated participation positively, and would recommend it to others (90-100%), as it was related to altruism, social support, and personal growth. A minority experienced participation as negative (2-10%) or upsetting (5-22%) due to feelings of guilt or painful memories. However, having a painful experience does not preclude seeing it as helpful. Most studies concerned face-to-face psychological autopsy studies, and only two studies included a control group. Research applying standardized measures may enhance our understanding of the factors germane to (non-)participation and to the likelihood of a positive/negative research experience. Vigilant recruitment and providing optimum care for participants are indicated. Further research may continue to improve participant safety and the research design of suicide bereavement studies.

Development of a plain-language library of educational resources for research participants.

There is a paucity of educational resources for potential clinical trial participants, particularly resources in plain language, attentive to health literacy principles and translated into native languages. The New England Research Subject Advocacy Group was formed to explore common issues, interests, and concerns related to the experience of participation in clinical research and research participant safety. Specifically, the group sought to increase community awareness and trust through the development and distribution of publicly accessible informational resources. In support of these aims, the group developed a robust library of high-quality, plain-language educational materials covering topics in health research, research participation, and common research procedures, and translated the majority of the materials into an additional 15 languages. These resources have been downloaded over 130,000 times. After English, the most common languages downloaded are Vietnamese, Spanish, and Korean.

Children's perspectives on the benefits and burdens of research participation

ABSTRACTBackground: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. Methods: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. Results: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. Conclusions: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.

From Differentiation to Concretisation: Integrative Experiments in Sustainable Architecture

It is widely recognised that the achievement of a sustainable built environment requires holistic design practices and approaches that are capable of balancing the varied, and often conflicting, demands of environmental, social and economic concerns. However, academics and practitioners have recently highlighted, and expressed concerns about the knowledge gap that currently exists within environmental policy, research and practice between understandings of the technical performance of buildings and their social meaning and relevance. This paper acknowledges these concerns and is developed from the author’s own direct experiences of practice-led research and active participation in design-build projects. It argues for a theoretically-informed and socially-engaged approach to built environment research, pedagogy and practice that seeks to encourage an integrative understanding of the design, realisation and use of sustainable architecture. The paper draws on the Philosophy of Technology and in particular the work of Andrew Feenberg to analyse the buildings and to propose an integrated and inclusive framework for understanding sustainable design that acknowledges not just what the built environment does, but also what it means. It also suggests that what a building means also informs what it can do, and for whom. Although the technical and social dimensions of design can be interpreted as distinct practices and are often institutionally separated, this paper argues that the realisation of sustainable design must seek a conscious interaction and interchange between these two differentiated dimensions.

Online fraud victims’ experiences of participating in qualitative interviews

Institutional Review Boards often raise concerns about qualitative research with vulnerable populations such as crime victims, and assume that research with vulnerable populations will be distressing for participants. It is therefore vital to examine whether participants do in fact experience adverse effects stemming from their participation. The existing research is clear that some members of vulnerable populations do feel distressed when they participate in research; however, in most cases, this distress is outweighed by the benefits of participation, such as a sense of having contributed to community awareness raising. This literature is, however, predominantly quantitative. In addition, it overwhelmingly focuses on violent trauma, providing no insight into participants’ experiences of research on non-violent traumatic events. The current study addresses these shortcomings by examining the research participation experiences of victims of online fraud. Specifically, an online questionnaire designed to elicit qualitative data was administered to victims of online fraud who had previously participated in a semi-structured qualitative interview. Among other findings, the study suggests that perceptions about the outcomes of research, in addition to the research process, influence victims’ satisfaction with their participation in qualitative research.

‘I like being a lab Rat’: student experiences of research participation

Undergraduate students are often expected to be participants in academic research. However, decisions relating to student participation in research are typically based on speculation or educator assumptions rather than a solid research base. We conducted three studies to investigate student experiences of research participation. These included online surveys (Study 1), semi-structured interviews (Study 2), and analysis of reflective essays (Study 3). A range of pedagogic and ethical issues were considered including motivation to participate, distress, and the educational value of participation. Findings suggest that the experience provides students with important opportunities to learn about research methodology and ethical issues which inform their own research practice. Further, students cite additional non-academic benefits of research participation such as self-discovery and networking opportunities. Negative experiences typically consisted of nervousness prior to the first laboratory study or boredom, though for some students (e.g. those uncomfortable in social situations) engagement in research may lead to anxiety. We conclude that participation in research has pedagogic value to students, and educators should promote those elements of the research experience (e.g. critiquing studies, networking with researchers) that are most beneficial. However, researchers and educators should also actively work to reduce apprehension and minimise potential distress.

Social workers' perceptions of barriers to interpersonal therapy implementation for treating postpartum depression in a primary care setting in Israel.

Research on evidence-based practice (EBP) implementation in social work often neglects to include evaluation of application barriers. This qualitative study examined social workers' perspectives of provider- and organisational-related barriers to implementing a brief eight-session interpersonal therapy (IPT) intervention, a time-limited EBP that addresses reducing depressive symptoms and improving interpersonal functioning. Implementation took place in a primary care setting in Israel and was aimed at treating women who have postpartum depression (PPD) symptoms. Using purposeful sampling, 25 primary care licensed social workers were interviewed between IPT training and implementation regarding their perceived barriers to implementing IPT in practice. Data analysis was facilitated using a phenomenological approach, which entails identifying the shared themes and shared experiences of research participants regarding barriers to implementing IPT. Three themes emerged from the analysis of interviews: Perceived lack of flexibility of IPT intervention in comparison with more familiar methods social workers previously applied, specifically regarding the number of sessions and therapeutic topics included in the IPT protocol; insecurity and hesitance to gain experience with a new method of intervention; and organisational barriers, including difficulties with referrals, the perception of HMOs as health facilities not suitable for therapy, and time constraints. Addressing perceived barriers of social workers toward implementing EBPs, such as IPT for postpartum depression, during the training phase is crucial for enabling appropriate implementation. Future training should include examining practitioners' attitudes toward implementation of EBPs, as part of standardised training protocols.

Gender Patterns in Faculty Participation: A Decade of Experience at a Mid-sized University

This article examines the progress made at a mid-sized Ontario university in reducing gender differences in faculty participation and experience of participation in university administration, decision-making, teaching, research, and other professional activities. Based on a survey of female and male faculty and the report of a Task Force on the Integration of Female Faculty, a number of recommendations were to be implemented beginning in the 1992/93 academic year. Progress is examined in light of a commitment to integration based on the principles of inclusion, visibility of procedure, equitable treatment, and climate of support. The article concludes by discussing issues related to participation, which have relevance beyond the specifics of this case.

Opening doors: Women's participation in feminist studies about domestic violence

Qualitative research into sensitive and emotionally laden topics can pose a number of challenges for researchers. This paper presents reflections from two social work researchers who have led multiple feminist-based qualitative research studies about research participation enabling positive experiences for women who have survived domestic violence. It is argued, women can identify new insights, find alternative ways of looking at their experiences, and access opportunities to debrief in a unique way in the research interview setting that differs from counselling experiences. The authors use the metaphor of ‘opening doors’ to show how women construct their research participation experience in similar ways and how researchers can draw on social work skills to enhance positive experiences for women.

Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children with Medical Complexity (TH370B)

Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children with Medical Complexity (TH370B)

Thinking intersectionally with/through narrative methodologies

abstractThis article explores the potentially productive relations and tensions between narrative methodologies and intersectional research. The following questions are explored: How might narrative approaches be productive tools for intersectional research? How does intersectionality challenge and potentially extend current modes of narrative inquiry? What are the tensions of thinking intersectionality with/through narrative and vice versa? While a substantial (and contested) literature exists on intersectionality, particularly in feminist theory, there is currently a lack of clarity about how to ‘do’ intersectionality at the level of research practice and methodology. Several conceptual frameworks have been developed, including those by Crenshaw (1991), McCall (2005) and Prins (2006), but their methodological implications remain vague. Furthermore, although narrative has previously been put forward as a method of analysis particularly well suited to intersectional research (Phoenix and Pattynama, 2006; Ludvig, 2006; Cole, 2009), the rationale and implications of this merger have not been well developed.This article explores the entanglements (Barad, 2007) produced by putting narrative inquiry and intersectional approaches in conversation with one another. It argues that narrative approaches potentially offer rich methodological tools for intersectional analyses, particularly in relation to their ability to grant epistemic privilege to marginalised voices (Mohanty, 2013) and trace the multiple and contradictory stories and experiences of research participants and their emphasis (in some variants) on the ethics of listening (Gilligan et al, 2003). Intersectional approaches also challenge and extend narrative methodologies in fruitful directions. In particular, intersectional thinking shows the limitations of focusing only on individual experience and textual story-telling, and highlights the methodological importance of finding ways to explore and analyse the material, structural and political realities that co-construct lives/narratives.

A Critical Overview of Interpretative Phenomenological Analysis: A Contemporary Qualitative Research Approach

Context: Interpretative Phenomenological Analysis (IPA) has become a dominant qualitative research methodology in many academic disciplines. The desire to understand the theoretical underpinnings of this research approach is evident. Objective: This paper is aimed at providing an overview and limitations of IPA. This paper will hopefully equip researchers when deciding on the appropriate research methodology to their research topic. Methods: A range of literature on qualitative research approach and phenomenology is reviewed. The relevant literatures on the theoretical underpinnings of IPA are examined. Results: The article illuminates that IPA represents a highly useful methodology in providing a rich and nuance insight into the experiences of research participants. Conclusion: IPA is a forward-looking research approach that adopts a flexible and versatile design to understand people’s experiences.

The Methodology and Research Participation Experiences of Participants in the Aborted Suicide Attempt Study

The participants’ study participation experiences in an intensive research methodology that examined recent aborted suicide attempts were explored. Individuals aged 18 or above and whose suicide attempts were voluntarily aborted after the suicide crisis negotiation with the police negotiators were interviewed and followed up at 1 and 3 months after the initial interview. Eleven participants gave their consent to the Police Negotiation Cadre of the Hong Kong Police Force for further contact by the research team during June 2012 and December 2014. Nine aborted attempters completed the semi-structured interviews conducted by the research team about their suicide attempt processes and the events leading to that. Seven of them completed the 3 months follow up. The majority of the participants were positive about being approached to take part in the study. They found the experience of talking about their suicide attempts more positive than expected, and felt the study participation was useful for them and meaningful for the society. None of the participants reported being distressed by the recruitment method or the interviews. Results suggest that such sensitive non-treatment research when conducted ethically, participants could benefit from it.

Are positive experiences of children in non-therapeutic research justifiable research benefits?

BackgroundConducting non-therapeutic research is ethically challenging because participation conveys risks and burden and no health benefit. In this paper, we report the positive experiences of a diverse group of healthy...

What can we learn from trial decliners about improving recruitment? Qualitative study.

BackgroundTrials increasingly experience problems in recruiting participants. Understanding the causes of poor recruitment is critical to developing solutions. We interviewed people who had declined a trial of an innovative psychological therapy for depression (REFRAMED) about their response to the trial invitation, in order to understand their decision and identify ways to improve recruitment.MethodsOf 214 people who declined the trial, 35 (16 %) gave permission to be contacted about a qualitative study to explore their decision. Analysis of transcripts of semi-structured interviews was informed by grounded theory.ResultsWe interviewed 20 informants: 14 women and six men, aged 18 to 77 years. Many interviewees had prior experience of research participation and positive views of the trial. Interviewees’ decision making resembled a four-stage sequential process; in each stage they either decided not to participate in the trial or progressed to the next stage. In stage 1, interviewees assessed the invitation in the context of their experiences and attitudes; we term those who opted out at this stage ‘prior decliners’ as they had an established position of declining trials. In stage 2, interviewees assessed their own eligibility; those who judged themselves ineligible and opted out at this stage are termed ‘self-excluders’. In stage 3, interviewees assessed their need for the trial therapy and potential to benefit; we term those who decided they did not need the trial therapy and opted out at this stage ‘treatment decliners’. In stage 4, interviewees deliberated the benefits and costs of trial participation; those who opted out after judging that disadvantages outweighed advantages are termed ‘trial decliners’. Across all stages, most individuals declined because they judged themselves ineligible or not in need of the trial therapy. While ‘prior decliners’ are unlikely to respond to any trial recruitment initiative, the factors leading others to decline are amenable to amelioration as they do not arise from a rejection of trials or a personal stance.ConclusionsTo improve recruitment in similar trials, the most successful interventions are likely to address patients’ assessments of their eligibility and their potential to benefit from the trial treatment, rather than reducing trial burden.Trial registrationInternational Standard Randomised Controlled Trial Number: ISRCTN85784627. Registration date 10 August 2011.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-016-1626-4) contains supplementary material, which is available to authorized users.

Health research participants' preferences for receiving research results.

Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants' preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study's topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey. Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one's) health, as well as information about studies' purposes and any medical advances based on the results. In general, respondents' most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results' information included in the survey. We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants' preferences for receiving the results. The study's findings highlight the potential for inconsistency between respondents' expressed preferences to receive specific types of results via specific methods and researchers' unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants' preferences for receiving research results.