Benefits Of Research Participation Research Articles

Beyond Trickle-Down Benefits to Research Participants

Few social scientists would dispute the importance of safeguarding research participants' rights and well-being; nevertheless, the bulk of attention paid to research methods is focused on the innovation in and improvement of sampling, measurement, and analysis techniques. Although these efforts are undoubtedly critical to generating optimal knowledge, policy, and practice, researchers must balance the pursuit of these ideals with their ethical responsibilities to the participants in their studies. This point may be especially important for social work researchers, given our frequent involvement with the most vulnerable of individuals regarding the most sensitive of topics (Jenson, 2006; Mertens & Ginsberg, 2008).The ethical imperative of beneficence requires two things of social science research: the minimization of risks to participants and the maximization of benefits to them. The former is guided by a broad literature regarding research ethics and is carefully regulated and enforced by institutional review boards. In contrast to this rightful emphasis on ensuring participants' safety and rights, the maximization of research benefits is often regarded as a welcome but nonessential bonus. Researchers often count on an altruistic, trickle-down theory of participants' benefits: that participants derive sufficient gratification from believing that their effort and responses will play an indirect role in gradually advancing knowledge, policy, and practice, thereby eventually benefiting the communities in which they are stakeholders. In an editorial, Jenson (2006) noted that social work researchers may be especially inclined to view their work as ultimately beneficial by virtue of its focus on social justice and empowerment. But Jenson also urged social work researchers to be more thoughtful and conscious of furthering the public good in designing their studies, forging collaborations with community stakeholders, and disseminating their results. Mertens and Ginsberg (2008), in presenting a transformative paradigm of research, asserted that social work researchers must constantly evaluate their work in relation to this question: How can my research at this time and place contribute to social justice? (p. 486). These calls for greater mindfulness regarding the potential of research to advance social justice are certainly important, and they stand to strengthen social work research. I would add that along with these longer term, bigger picture recommendations, the provision of direct and meaningful benefits to participants deserves a central place in the planning and execution of social work research. The benefits of research participation have been studied in relation to an array of topics, many of which relate to social work fields of practice. Participants in studies of diverse and sensitive issues--such as refugee resettlement (Dyregrov, Dyregrov, & Raundalen, 2000), bereavement (Dyregrov, 2004), physical trauma (for example, car accidents; see Ruzek & Zatzick, 2000), and health issues, such as infertility (Peddle, Porter, van Teijlingen, & Bhattacharya, 2006) and diabetes (Peel, Parry, Douglas, & Lawton, 2006)--have characterized their research involvement as positive or even very positive. In their summary of the costs and benefits of trauma-related research, Newman and Kaloupek (2004) reviewed findings that even though participants may have had intense reactions to their research experience, this did not necessarily translate into regret or negative feelings about their involvement. In contrary, a majority of participants in trauma studies reported benefits of various sorts, including insight, a sense of emotional relief, and feelings of being supported. In their review, Becker-Blease and Freyd (2006) cited similar findings that participants found studies about sexual abuse challenging but rewarding. Becker-Blease and Freyd argued not only that asking about difficult issues such as childhood sexual abuse can be beneficial and constructive, but also that not asking about these can be detrimental insofar as the omission denies participants an opportunity for disclosure and self-expression. …

Parents' Online Portrayals of Pediatric Treatment and Research Options

PARENTS OF SERIOUSLY ILL CHILDREN FACE difficult decisions when standard therapies are limited or ineffective. In their search for information, they may turn to websites created by other parents facing similar experiences. We conducted a qualitative content analysis of 21 websites created by families with children affected by cancer or genetic disease, two serious conditions with a range of treatment and clinical trial options. Our research questions address how parent authors portray serious pediatric illness, available options, parties to decision making, and sources of influence. In addition, we examine what these sites reveal about family vulnerability to various risks, particularly the risk of misunderstanding the distinction between standard treatment and research and the risk of overestimating the likely benefits of research participation, as well as whether vulnerability varies by type of condition. Our results demonstrate typically favorable views on research, but with inadequate distinctions between research and treatment and a complex set of trade-offs in consideration of research risks and potential benefits. While portraits of vulnerability emerge for both parents and children, so do portraits of strength and resilience. As a result, parents describe frustration with both under- and overprotection from research participation. Our discussion of these findings clarifies the potential for parent-authored websites to inform and influence families considering research and treatment options for their seriously ill children.

Perceived Barriers and Benefits to Research Participation Among School Administrators*

Gaining access to conduct research in schools can be challenging, but little has been done to directly assess school administrators' perceptions of research. The purpose of this qualitative study was to increase understanding of barriers and benefits of research participation as perceived by superintendents and principals in elementary, middle, and high school settings. Administrators (14 elementary, 14 middle, and 15 high school principals and 14 superintendents; total n = 57) were randomly selected from across a Midwestern state and were interviewed by phone following a semistructured guide of questions. Six major themes were consistent across principals and superintendents and reached saturation. Themes indicated that administrators were interested in research projects that (1) provide tangible benefits to their school, (2) are consistent with their academic mission, (3) are not burdensome, (4) do not take place during state assessment time or other busy times, and (5) are credible and noncontroversial. Previous research experiences leave a lasting impression on administrators and influenced their future decisions. Findings indicate that researchers should carefully frame their research in terms of how it will directly benefit the school, keeping in mind that academic performance is the top priority for school administrators. Researchers should be very clear and realistic about the time commitments, how the research results will be provided, and how the study may be used to improve the school's academic mission.

Children's Perception of Research Participation: Examining Trauma Exposure and Distress

USING THE REACTIONS TO RESEARCH Participation Questionnaire for Children (RRPQ-C), this study examined perceptions of research participation among 181 school-aged children with and without trauma histories. As part of two larger studies, children completed non-trauma related tasks to assess emotion understanding and cognitive ability. Parents (and not children) reported on children's interpersonal (e.g., sexual abuse, physical abuse, witnessing domestic violence, witnessing community violence) and non-interpersonal (e.g., motor vehicle accidents, medical traumas, natural disasters) trauma exposure. Children's perceptions of costs and benefits of research participation and understanding of informed consent did not vary as a function of trauma exposure. The number of traumatic events experienced was unrelated to children's perceptions. Furthermore, children across trauma-exposure groups generally reported a positive cost-benefit ratio, and understanding of the consent information. Implications of these data are discussed.

Ethical Issues in Research with Hispanic Drug Users: Participant Perspectives on Risks and Benefits

There has been considerable discussion in the research ethics literature concerning special researcher responsibilities in studying vulnerable populations, including whether or not drug addicts, as a result of their health condition and craving for drugs, constitute a vulnerable group from a human subject perspective. In the assessment of ethical issues, researchers in recent years have begun to recognize the critical importance of hearing the subject's voice and learning the concerns and attitudes of those who participate in research. To date, however, despite a significant increase in studies of not-in-treatment drug users, little attempt has been made to determine the perspectives of drug users about participation in research, especially ethnic minority drug users, and in particular, Hispanic drug users. Based on recent findings of a study of drug user attitudes and perspectives on research, this paper reports on the perceived risks and benefits of participation in research of a subsample of Hispanic street drug users from Hartford, Connecticut

The second wave: Toward responsible inclusion of pregnant women in research.

Though much progress has been made on inclusion of non-pregnant women in research, thoughtful discussion about including pregnant women has lagged behind. We outline resulting knowledge gaps and their costs and then highlight four reasons why ethically we are obliged to confront the challenges of including pregnant women in clinical research. These are: the need for effective treatment for women during pregnancy, fetal safety, harm from the reticence to prescribe potentially beneficial medication, and the broader issues of justice and access to benefits of research participation. Going forward requires shifting the burden of justification from inclusion to exclusion and developing an adequate ethical framework that specifies suitable justifications for excluding pregnant women from research.

Research and clinical ethics after the tsunami: Sri Lanka

In late 2004, the Journal of Traumatic Stress published a special section about the ethics of disaster research, addressing ethical issues related to conducting research after disasters and terrorist attacks, and based on a meeting organised by The New York Academy of Medicine and the US National Institute of Mental Health.1 Four areas of critical importance to development, evaluation, and conduct of research protocols after a disaster were identified: decisional capacity of potential participants, vulnerability of research participants, risks and benefits of research participation, and informed consent.

Palliative Care Research: Issues and Opportunities

Palliative Care Research: Issues and Opportunities

Children's capacity to agree to psychological research: knowledge of risks and benefits and voluntariness.

A series of studies investigated the capacity of children between the ages of 7 and 12 to give free and informed consent to participation in psychological research. Children were reasonably accurate in describing the purpose of studies, but many did not understand the possible benefits or especially the possible risks of participating. In several studies children's consent was not affected by the knowledge that their parents had given their permission or by the parents saying that they would not be upset if the children refused. In contrast, other studies found that children were much more likely to stop their participation if the experimenter said explicitly that she would not be upset if they stopped. We suggest that experimenters should pay more attention to describing the possible risks and benefits of participation in research, and that they should also make it clearer to children that they are free to stop once they have begun.

Ethical issues in psychosocial research among patients with cancer

The ethical implications of psychosocial research among patients with cancer are discussed. Two key issues were identified: obtaining informed consent and the impact of participating in research. Barriers to obtaining genuinely informed consent are described, as well as the costs and benefits of participation in research. Recommendations are made for the conduct of future research, relating to the removal of barriers to informed consent and monitoring the impact of the research process on its subjects.