Proximity, Ethical Dilemmas, and Community Research Workers

Abstract

Background:In community-engaged research (CEnR), recruitment and data collection are often assigned to community research workers (CRWs). CRWs are hired because of close ties with target communities and presumed greater success recruiting and gathering data from marginalized populations. The value conflicts and personal stress facing CRWs have been described in the international context; however, less attention has been paid to these issues in U.S. settings. Methods: Qualitative interviews were held with CRWs about their experiences with CEnR. Interviews were transcribed and coded using Atlas.ti. Results: The data indicate that CRWs working in settings controlled by the participants, such as neighborhood streets and participant homes, are more likely to face conflicts between following the norms of research and meeting what they perceive to be their everyday obligations to help specific others (duties of relational ethics) and to keep themselves safe. This suggests that "physical proximity" (understood as degree of penetration into the physical domain of the target research community) is an important factor in the ethics of actual practice in CEnR. Conclusions: CRWs often experience ethical complexities that are simply not in the realm of experience of most higher level researchers. How CRWs navigate conflicting ethical obligations can affect the quality and usefulness of the data collected and thereby affect communities by influencing policies informed by these data. Soliciting the perspectives of CRWs early in the process of research design and development is recommended to maximize the benefits achievable through CEnR.

Moral Stress, Moral Practice, and Ethical Climate in Community-Based Drug-Use Research: Views From the Front Line

“…Respondents met frequently with their principal investigator and perceived their organizations as dedicated to research ethics and providing clear performance expectations. However, consistent with our focus-group findings and previous qualitative studies (Alexander and Richman 2008; Richman, et al 2012; True et al 2011), approximately 40% endorsed items indicating their organization did not provide counseling for job-related stress and had unrealistic demands for recruitment numbers and multiple staff role assignments. As predicted, a positive organizational climate was associated with a strong research commitment and with lower levels of moral stress, research mistrust, and moral practice dilemmas.…”

“…Our national survey thus provides some insights into the characteristics of individuals responsible for the implementation of this important work. First, while small sample qualitative studies have focused on staff drawn from the community for their insider knowledge (Alexander and Richman 2008; Andrews et al 2004; Berg et al 2004; Hill et al 1996; Nilsson et al 2011; Richman et al 2012; Sunderland et al 2011; Terpstra et al 2011; True et al 2011), in our survey a majority of respondents were college educated and many held graduate degrees. Regardless of educational status, 70% had lived in communities in which they conduct research and a quarter reported a personal history of drug use.…”

“…Ethics climate has been linked with moral distress and work-related moral stress among nurses (Hamric, Borchers, and Epstein 2012; Hart 2005; Lutzen et al 2010; Olson 1998; Pauly et al 2009; Zuzelo 2007). Qualitative studies involving community-based research workers conducting a broad range of studies suggest that lack of organizational ethics training and support may be similarly associated with work-related moral stress among front-line drug-use research staff members (Alexander and Richman 2008; Richman, Alexander, and True 2012; Sunderland et al 2011; Terpstra et al 2011; True, Alexander, and Richman 2011). …”

Mother–Daughter Dyad Recruitment and Cancer Intervention Challenges in an African American Sample

“…Given their lay position, community recruiters are highly effective at recruitment of especially hard to reach populations. However, this recruitment and access method does not come without challenges to the scientific process [45]. In this study, these challenges manifested around issues of recruitment and eligibility.…”

Public Health Research

“…Third, researchers involved in collaborative research have a responsibility to colleagues and collaborators, especially given that research may play a crucial role in capacity building (Garcia and Curioso 2008 ). Although partnerships with local researchers have been touted as highly valuable (Costello and Zumla 2000 ), these ties may also result in unexpected ethical dilemmas for local researchers if confl icts arise between their research activities and their established local obligations and responsibilities (Richman et al 2012 ). A fourth responsibility of researchers is dedication to the research enterprise.…”