Benefits Of Research Participation Research Articles

Ethical inclusion: Risks and benefits of research from the perspective of perinatal people with opioid use disorders who have experienced incarceration.

Research ethics guidelines and emphasis on representation in research guide the inclusion of marginalized groups, including people with perinatal opioid use disorders (OUD) and people experiencing incarceration in the United States. However, insights from participants regarding the risks and benefits of participation are not adequately considered. The aim of this study was to examine the risks and benefits of research participation from the perspective of pregnant/postpartum people with OUD who have experienced incarceration. We recruited people who had experience with perinatal incarceration and were either currently pregnant or postpartum, and at least 18 years old. All participants met the clinical criteria for OUD. Our study did not have exclusion criteria based on gender, race, or ethnicity. Participants were either currently incarcerated at the North Carolina Correctional Institute for Women in Raleigh, North Carolina, United States or had previously experienced perinatal incarceration and were recruited from a perinatal substance use disorder treatment program located in North Carolina. Between 9/2021-4/2022, we completed 12 interviews with pregnant/postpartum people with OUD, approximately half who were currently incarcerated and half with a recent history of perinatal incarceration. Interviews were conducted via Webex phone or video. The interviews followed a scripted interview guide and lasted one hour on average. Interview transcripts were analyzed using the Rigorous and Accelerated Data Reduction technique to produce an overarching thematic framework. Our analysis identified benefits, including the personal advantage of self-expression, helping others and contributing to change, and financial incentives. Risks included stigma and breach of confidentiality, misunderstanding of the distinction between research and advocacy, and limited ability to share their whole experience. Participant-identified benefits of research mirrored those from other marginalized populations, though participant-identified risks were novel and nuanced. Recruitment and consent should move beyond normative research ethics committees protocol language to consider the perspectives of participants.

Participatory approaches to delivering clinical sexually transmitted infections services: a narrative review.

Although sexual health programming and clinical sexually transmitted infections (STIs) services have traditionally been developed through 'top-down' approaches, there is emerging evidence that participatory approaches benefit the development and implementation of such services. Although other studies have already highlighted the benefits of participation in research and implementation of clinical STIs services delivery, this narrative review focuses on how community participation in clinical STIs services delivery has been operationalised and on the various aspects of clinical STIs services delivery in which participatory processes have been implemented. A PubMed search was conducted in January 2022 using the search terms that reflected the topic of participatory processes in clinical STIs services delivery to identify relevant papers. Only peer-reviewed papers published in English were reviewed, and no timeframe was selected. After reviewing existing studies, we identified how community participation has been incorporated across stages of clinical STIs service delivery, including planning, developing, delivering, evaluating, and scaling up, as well as gaps and challenges faced in implementing such approaches. This review highlighted how a wide range of participatory processes characterised by varying depths of participation have been used in the above processes. Challenges such as funding, socio-cultural barriers, technical barriers and the digital divide, issues of quality assurance, and standardising the measurement of participation remain, which may impede the uptake of participatory processes in clinical STIs services.

A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project

An understanding of the ethical underpinnings of human subjects research that involves some risk to participants without anticipated direct clinical benefit-such as the kidney biopsy procedure as part of the Kidney Precision Medicine Project (KPMP)-requires a critical examination of the risks as well as the diverse set of countervailing potential benefits to participants. This kind of deliberation has been foundational to the development and conduct of the KPMP. Herein, we use illustrative features of this research paradigm to develop a more comprehensive conceptualization of the types of benefits that may be important to research participants, including respecting pluralistic values, supporting the opportunity to act altruistically, and enhancing benefits to a participant's community. This approach may serve as a model to help researchers, ethicists, and regulators to identify opportunities to better respect and support participants in future research that entails some risk to these participants as well as to improve the quality of research for people with kidney disease.

Enhanced Mentored Undergraduate Research Experiences: Successful Strategies Used in Two Laboratories at Auburn University

Purpose There is a growing trend toward the provision of undergraduate research experiences as a high impact educational practice that promotes the development of critical thinking and problem-solving skills. This tutorial aims to provide mentoring pathways and resources to faculty mentors who may be unaware of the benefits of undergraduate student participation in research or faculty researchers who are interested in developing meaningful mentored undergraduate research experiences (MUREs). Faculty and student perspectives shared from two research labs at Auburn University illustrate an applied framework for implementation of MUREs. The observed benefits and potential barriers related to the development of MUREs in these laboratories as well as specific recommendations for a structured mentoring approach to optimize student training and research deliverables are described. Conclusions Key elements for developing successful MUREs include relationship building between the mentor and the student, identifying the benefits for both the students and mentor, and persevering beyond barriers to implementation. The utilization of practical guides, theoretical approaches, and collaborative efforts yielded benefits for both students and mentoring faculty in two research labs at Auburn University. Practical guides for obtaining funding for MUREs and accompanying supplemental materials (a lab manual template and manuscript-writing guide) that have supported success in our labs are provided. Supplemental Material https://doi.org/10.23641/asha.14044067

Perspectives of pregnant and breastfeeding women on longitudinal clinical studies that require non-invasive biospecimen collection \u2013 a qualitative study

BackgroundInvestigation of the microbiome during early life has stimulated an increasing number of cohort studies in pregnant and breastfeeding women that require non-invasive biospecimen collection. The objective of this study was to explore pregnant and breastfeeding women’s perspectives on longitudinal clinical studies that require non-invasive biospecimen collection and how they relate to study logistics and research participation.MethodsWe completed in-depth semi-structured interviews with 40 women who were either pregnant (n = 20) or breastfeeding (n = 20) to identify their understanding of longitudinal clinical research, the motivations and barriers to their participation in such research, and their preferences for providing non-invasive biospecimen samples.ResultsPerspectives on research participation were focused on breastfeeding and perinatal education. Participants cited direct benefits of research participation that included flexible childcare, lactation support, and incentives and compensation. Healthcare providers, physician offices, and social media were cited as credible sources and channels for recruitment. Participants viewed lengthy study visits and child protection as the primary barriers to research participation. The barriers to biospecimen collection were centered on stool sampling, inadequate instructions, and drop-off convenience.ConclusionWomen in this study were interested in participating in clinical studies that require non-invasive biospecimen collection, and motivations to participate center on breastfeeding and the potential to make a scientific contribution that helps others. Effectively recruiting pregnant or breastfeeding participants for longitudinal microbiome studies requires protocols that account for participant interests and consideration for their time.

Considering the benefits of research participation: insights from a study of adult EAL educators


 
 
 Despite the professional learning benefits that may be realised through participation in research, many institutions and teachers are reluctant to get involved. They (correctly) anticipate that it will require some time, effort, and commitment. They may understand that research is important for improving education practices but more direct and immediate value for them and, importantly, how to gain it may not be obvious. To address this issue, we report a part of a six-month study that used institutional ethnography as the method of inquiry. We present and analyse three generative episodes that we observed and experienced in the context of our research collaboration with the participants at one adult community-based English as an Additional Language (EAL) institution in Melbourne (Australia). These episodes provide important insights into the ways in which our participants were proactive in realising the benefits of participating in the research. The participating teachers brought research and practice into regular dialogue and strategically utilised our partnership for their professional learning. We conclude by discussing some practical strategies for EAL institutions, teachers, and researchers who want to unlock and maximise the learning potential of research partnerships.
 
 

Examining the Effect of Internalized HIV-Related Stigma on Perceptions of Research Participation among HIV-Positive African American Women.

HIV-related stigma may influence ethical concerns in health disparity populations, particularly groups with histories of race, gender, and class oppression in medical research such as African American women. However, a dearth of research has examined how HIV-related stigma influences perceptions of the research process among African American women who participate in health research. The goal of the current study was to examine whether HIV-related stigma experienced on the micro-level, specifically internalized HIV-related stigma, is associated with reactions to research participation in 5 domains: attitudes toward participation, perceptions of research benefits, emotional reactions, perceived drawbacks of the research, and global evaluations of the research. We also examine whether internalized HIV-related stigma is associated with difficulty in answering questions related to sensitive topics. We found that women with higher levels of internalized HIV-related stigma reported more emotional reactions to research, perceived more drawbacks of the research, and expressed more difficulty in answering sensitive questions. Understanding how HIV-related stigma influences perceived risks and benefits of research participation may play an important role in guiding best practices for ethical engagement with HIV-positive African American women who participate in health research.

Talking to Migrants: Invisibility, Vulnerability, and Protection

ABSTRACT Individuals and families are being displaced from the Northern Triangle of Central America by structural and physical violence. Clandestine migration increases the invisibility of forced migrants and makes them difficult to access for researchers. Gatekeepers perceive or depict forced migrants as vulnerable populations and often deny investigators access to them, arguing that traumatised people should not be asked to retell their stories and be revictimised. The growing literature on research participation suggests that individuals categorised as vulnerable often decide to collaborate in studies, because they welcome the opportunity to talk about their experience to an empathetic listener and to help improve policies and services. Immediate distress produced by revisiting painful moments in life often dissipates quickly and is outweighed by the benefits of research participation, such as feelings of catharsis and a sense of acknowledgement and purpose. When gatekeepers deny investigators access to vulnerable population groups, they preclude them from autonomously deciding whether to grant or withhold informed consent and from exercising their right to participate in research. Their invisibilities and silences render migrants more susceptible to human rights violations. Taking protection seriously means widening the research participation of vulnerable individuals.

Evaluation of the burdens and benefits of participation in research by parents of children with life-limiting illnesses.

Research is needed to improve care and diminish suffering for children with life-limiting illnesses and their parents. However, there are doubts about whether it is possible to conduct paediatric end of life research safely and ethically, as it may unduly burden or inadvertently harm participants. To compare and evaluate responses from participants to the assessments of burdens and benefits that were conducted at two timepoints during a phenomenological study that investigated parents' experiences of having a child with life-limiting cancer participate in a Phase I clinical trial. Parents reported that participating in the study was beneficial and resulted in minimal burden or distress. The assessment of benefits and burdens at the first timepoint appeared sufficient to understand participants' experiences. This study adds to the evidence that research may be safely and effectively conducted with parents of children who are deceased or have life-limiting illnesses. Further research is needed to evaluate the most effective timing of assessments of the burdens and benefits of their participation in research. It is important when conducting research with people with life-limiting illnesses or their family members to assess the burdens and benefits of their participation, to understand their experiences and assist in its conduct.

Anticipatory Waivers of Consent for Pediatric Biobanking.

As pediatric biobank research grows, additional guidance will be needed about whether researchers should always obtain consent from participants when they reach the legal age of majority. Biobanks struggle with a range of practical and ethical issues related to this question. We propose a framework for the use of anticipatory waivers of consent that is empirically rooted in research that shows that children and adolescents are often developmentally capable of meaningful deliberation about the risks and benefits of participation in research. Accordingly, bright-line legal concepts of majority or competency do not accurately capture the emerging capacity for autonomous decision-making of many pediatric research participants and unnecessarily complicate the issues about contacting participants at the age of majority to obtain consent for the continued or first use of their biospecimens that were obtained during childhood. We believe the proposed framework provides an ethically sound balance between the concern for potential exploitation of vulnerable populations, the impetus for the federal regulations governing research with children, and the need to conduct valuable research in the age of genomic medicine.

Perceived Risks and Benefits in IPV and HIV Research: Listening to the Voices of HIV-Positive African American Women.

African American women living with HIV were asked to reflect on the perceived risks and benefits of research participation after completing a study examining socially sensitive issues in their lives, including intimate partner violence (IPV) and HIV. Administration of standardized quantitative instruments yielded positive responses to the research experience. However, qualitative assessments of perceived risks and benefits revealed more nuanced responses. For example, confidentiality concerns were more prominent in open-ended responses as was participants' positive attitudes toward monetary compensation. In addition, some women reported that study participation provided them with new insights about their experiences with IPV. Findings suggest that empirical studies on research protections involving potentially distressing and socially sensitive experiences with vulnerable populations require both quantitative and qualitative assessments of perceived risks and benefits. We discuss implications of our findings for ethics practices in trauma-related research among populations with multiple social vulnerabilities.

From waste product to blood, brains and narratives: developing a pluralist sociology of contributions to health research.

The aim of this paper is to examine the meaning of the concept of donation in health research. Drawing on a set of narrative interviews with people invited to donate biosamples for research and a range of other studies, we identify several conceptual themes that speak to the complexity of the current landscape of critical thinking about donation. These conceptual themes are: the language of ‘donation’; a hierarchy of biosamples; alternative informational value; narratives as donation; coincidental donation, convenience and degree of invasiveness; and rights, consent and benefits of research participation. We call for a reconceptualisation of research donation to encompass not only the numerous types of sample readily classed as donations, but also other types of data and contributions, including narrative interviews, psychometric data, patient‐reported outcome measures, record‐linkage, and time and effort. We argue for the development of a pluralist sociology of research donations, and suggest that a ‘sociology of research contributions’ might better capture this complexity.

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.

Research Participation for Bereaved Family Members: Experience and Insights From a Qualitative Study.

Research has highlighted potential negative health outcomes for bereaved family members after loss of a loved one in the ICU and has helped identify areas for intervention. The findings exist because these family members agreed to participate in research studies; but little is known about their experience of research participation. To understand why family members participate in bereavement research and the benefits of participating in such research. Qualitative study using interviews with bereaved family members as well as letters written by bereaved family members. Forty-one ICUs in France. Family members who lost a loved one in the ICU. Thematic analysis was used and was based on 54 narratives, 52 letters, and written annotations on 150 questionnaires. Regarding reasons to participate and benefits of research participation, 6 themes emerged: 1) to say thank you to the ICU team, 2) to help other bereaved family members, 3) to express myself from a distance, 4) to not feel abandoned, 5) to share difficult emotions and to help make meaning of the death, and 6) to receive support and care. Bereavement research is possible after loss of a loved one in the ICU and may even be beneficial for family members. Exploring families' experiences of research participation helps define specific family needs in this setting. After the loss of a loved one in the ICU, bereaved families need opportunities to voice their feelings about their experience in the ICU and to give meaning to the end-of-life process; families also need to feel that they are still cared for. Support for the family may need to be developed after loss of a loved one in the ICU in the form of condolence letters, phone calls, or postintensive care meetings.

The effects of cancer research participation on patient experience: a mixed-methods analysis.

Patient‐reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as ‘very good/excellent’ (OR adj:1.64, 95%CI: 1.53–1.76, P < 0.001) and to describe positive patient experiences, such as better access to non‐standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research.

"There Are No Known Benefits . . .": Considering the Risk/Benefit Ratio of Qualitative Research.

Institutional review boards (IRBs) are responsible for weighing the risks and benefits of research participation. Qualitative researchers note numerous instances where IRB ethical frameworks fail to align with the ethics of their research projects and point out that IRB understandings of the benefits and risks of research often differ from those of the participants they seek to protect. This qualitative cross-case research investigates participants' interview experiences in six qualitative studies that differed in their methods, subject of focus, and populations. Our findings indicate that contemporary IRBs' use of population "vulnerability" and topic "sensitivity" to assess project risk does not adequately determine the benefits, risks, or ethicality of research. We recommend that IRBs treat as real the evidence for benefits in qualitative research, recognize that sensitivity and vulnerability do not predict risk, and encourage researchers to attend to relationships in their projects.

Alcohol treatment research assessment exposure: A critical review of the literature.

Alcohol treatment researchers have speculated about the benefits of research participation (e.g., research follow-up interviews functioning as aftercare) for more than 4 decades (Gallen, 1974). Alternatively, research participation can decrease study design sensitivity and hamper the interpretability of research findings. To the extent that the typical alcohol treatment trial is characterized by frequent and comprehensive data collection, accounting for potential research assessment-related effects is essential for proper interpretation of study findings. Given this background, the purpose of this article is to review the alcohol treatment research literature on assessment exposure resulting in subject reactivity. In addition, interventions that use data collection activities to inform clinical practice are receiving increased attention, and such interventions share common characteristics with research assessment-related clinical improvements. Therefore, a second purpose of this article is to compare and contrast these 2 influences of behavior change. Study findings indicate that during and posttreatment data collection activities (i.e., both research and clinical data) positively influence clinical outcomes, although there appears to be important differences in regard to the mechanisms by which these 2 data collection activities exert their influence. Understanding of mechanisms of behavior change, effect boundaries, and the conditions under which clinical improvement is most likely to occur is only at a rudimentary level.

‘That was helpful … no one has talked to me about that before’: Research participation as a therapeutic activity

There is considerable interest in the various ethical problems associated with undertaking health and social science research. Participants in such research are often considered vulnerable because of their health status, social position, or dependence on others for health and welfare services. Researchers and ethics committees pay scrupulous attention to the identification and amelioration of risks to participants. Rarely are the benefits to participants of engaging in research highlighted or drawn to the attention of potential participants. Such potential benefits need to be considered by researchers and reviewers when considering the balance of benefits and harms associated with research projects. In this paper, we particularly consider the psychotherapeutic benefits of participation in research.

Mea Culpa: Scientific Misconduct

Mea Culpa: Scientific Misconduct

The origins of a research community in the Majengo observational cohort study, Nairobi, Kenya

BackgroundSince the 1980s the Majengo Observational Cohort Study (MOCS) has examined sexually transmitted infections, in particular HIV/AIDS, in a cohort of sex workers in Majengo, an impoverished urban village in Nairobi, Kenya. The MOCS investigators have faced criticism since the women have remained in the sex trade for the duration of their participation in the study, prompting concerns about exploitation. Yet despite these concerns, the cohort has survived for almost 30 years.MethodsIn this retrospective qualitative case study, we examine the community engagement practices of the MOCS and explore the factors that account for its durability.ResultsWomen in sex work in Kenya were a highly stigmatized and disfranchised community. As a result, there was no natural 'community' of sex workers either in Nairobi or in the Majengo village. The Majengo clinic aimed to reduce the barriers to health care the women experienced at the STC clinic by bringing the services closer to them and by providing a non-discriminatory environment. The women acknowledged the fact they had hoped their participation in the MOCS would have helped them find a path out of the sex trade. But our findings also add another dimension to this debate, since every cohort member we interviewed expressed her gratitude for the deep impact the MOCS has had on her life, much of it beyond the improved health status made possible by access to quality healthcare services. Participation in the MOCS has improved and enriched their lives. The CE activities have played a central role in creating a community that did not exist independently of the MOCS.ConclusionsOur case study identified 3 distinct phases of community engagement in the MOCS: (1) reaching out: mobilization, dialogue and education; (2) foundations of trust through relationships of care; and (3) leveraging existing social capital to form a cohort community. The findings demonstrate the importance of some of the less obvious benefits of participation in research, namely the evolving experience of community and the accompanying gains in personal security and solidarity that have kept the women in the cohort, some for 20 years or more.