The ethics of community-based research with people who use drugs: results of a scoping review

Souleymanov, Rusty; Kuzmanović, Dario; Marshall, Zack; Scheim, Ayden I.; Mikiki, Mikiki; Worthington, Catherine; Millson, Margaret Peggy

doi:10.1186/s12910-016-0108-2

Cited by 64 publications

(48 citation statements)

References 43 publications

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“…This movement demanded the creation of programming and supports, “in fighting the fear, shame and stigma that keep us from fully participating in our communities and from accessing health services” (Canadian HIV/AIDS Legal Network, 2006, p.22). CBPR methods have been increasingly adopted in research with diverse groups, including PWUD (Souleymanov et al, 2016), men who have sex with men (Rhodes et al, 2011), people living with HIV/AIDS (Guta et al, 2014), and survivors of domestic violence (Malpass et al, 2016). …”

Section: Introductionmentioning

confidence: 99%

Community-based participatory research in a heavily researched inner city neighbourhood: Perspectives of people who use drugs on their experiences as peer researchers

Damon

Callon

Wiebe

et al. 2017

Social Science & Medicine

113

146

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Community based participatory research (CBPR) has become an increasingly common approach to research involving people who use(d) drugs (PWUD), who are often employed as Peer Researchers on these projects. This paper seeks to understand the impact of CBPR on PWUD, particularly those living in heavily researched and stigmatized neighbourhoods where CBPR projects are often located. This study draws on 14 in-depth interviews with PWUD who had previous experience as both peer researchers and research participants in CBPR projects conducted between July 2010 and February 2011. The study employed a CBPR approach in its study design, recruitment, interviewing, and analysis. Our analysis indicates that participants were supportive of CBPR in principle and described the ways in which it helped contest stigmatizing assumptions and researcher bias. Participants also reported positive personal gains from participation in CBPR projects. However, many participants had negative experiences with CBPR projects, especially when CBPR principles were implemented in a superficial or incomplete manner. Participants emphasized the importance of inclusiveness and active deconstruction of hierarchy between researchers and community members to successful CBPR among drug using populations. CBPR has been widely adopted as a research approach within marginalized communities but has often been implemented inconsistently. Still, CBPR can empower communities to contest forms of social stigma that are often reproduced through academic research on marginalized communities. Our findings describe how the benefits of CBPR are maximized when CBPR principles are consistently applied and when community based researchers are supported in ways that reduce hierarchies of power. This suggests a need for capacity building within affected communities to develop independent support, training, and grievance processes for peer researchers.

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Section: Introductionmentioning

confidence: 99%

Community-based participatory research in a heavily researched inner city neighbourhood: Perspectives of people who use drugs on their experiences as peer researchers

Damon

Callon

Wiebe

et al. 2017

Social Science & Medicine

113

146

View full text Add to dashboard Cite

show abstract

“…However, the predominance of the biomedical research model within review frameworks can make it diffi cult for REBs and IRBs to conceptualize the risks unique to social science research (Small et al, 2014 ). Their lack of familiarity with social sciences research can result in overemphasis on the biomedical approach to ethics review, while overlooking or failing to understand the complexities of community-based research (Malone, Yerger, McGruder, & Froelicher, 2006 ;Souleymanov et al, 2016 ).…”

Section: The Role Of Ethics Review Boardsmentioning

confidence: 99%

Challenges to Studying Illicit Drug Users

Ryan

Smeltzer

Sharts‐Hopko

2019

J of Nursing Scholarship

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Purpose: Throughout the world, illicit drug use continues to pose a significant risk to public health. The opioid crisis in North America, the diversion of the prescription drug tramadol throughout Africa, and the increasing supply of methamphetamines in East and South Asia all contribute to increasing risks to individual and societal health. Furthermore, the violation of human rights in efforts to enforce prohibitionist values poses significant threats to many individuals worldwide. With these evolving situations, it is imperative that researchers direct their attention to the various populations of illicit drug users. However, the inclusion of illicit drug users, often considered a vulnerable population, as participants in research studies presents several increased risks that must be addressed in study protocols. Researchers are required to provide “additional safeguards” to all study protocols involving illicit drug users, but there is often substantial variability and inconsistency in how these safeguards are applied. Additional safeguards can be timely, costly, and unduly burdensome for researchers, ethical review boards, and research participants. Approach: Through synthesis of the current literature, this article addresses the barriers to studying illicit drug users and the methods researchers can utilize to minimize risk. A case study is provided to illustrate the high level of scrutiny of study protocols involving the participation of illicit drug users and the effect of such scrutiny on recruitment of participants. The article concludes with a discussion of the effects of the current political climate on the recruitment of illicit drug users in research. Conclusions: Individuals who participate in criminal or illegal behaviors such as illicit drug use, prostitution, illegal entry into a country, and human trafficking are susceptible to multiple physical, mental, and social health risks, as well as criminal prosecution. The importance of research on the health of marginalized populations cannot be overstated. This work must continue, and at the same time, we must continue to protect these individuals to the best of our ability through diligent attention to sound research methods. Clinical Relevance: The use of illicit drugs continues to pose a substantial threat to global health. Individuals who use illicit drugs are susceptible to multiple physical, mental, and social health risks, as well as criminal prosecution. It is imperative that researchers study these vulnerable populations in order to develop interventions to minimize individual and societal harm. There are several barriers to the study of illicit drug users that must be addressed through rigorous methodology and the addition of safeguards.

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“…CRs bring valuable expertise to the difficult task of identifying and following up with research participants living in precarious or transient circumstances, particularly those who do not access treatment or other services (Griffiths et al, 1993; Madiega et al, 2013). For communities facing discrimination and marginalization, inclusion of CRs as paid research staff can contribute to capacity-building and circulation of scientific knowledge, build collaborations between communities and research organizations, and lead to interventions and policies informed by community expertise (Canadian HIV/AIDS Legal Network, 2005; Aellah & Geissler, 2016; Souleymanov et al, 2016). …”

Section: Introductionmentioning

confidence: 99%

“…For example, when CRs known for their work on HIV or drug use studies conduct research activities in community spaces and private homes, it increases the risk of exposure and stigmatization for research participants (Madiega, 2013; Souleymanov et al, 2016). CRs who work with individuals and communities affected by addiction and serious illness often encounter what has been termed the ‘moral hazard’ of being unable to offer adequate services in the face of great need (Broadhead et al, 1995).…”

Section: Introductionmentioning

confidence: 99%

Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research

True¹,

Alexander

Fisher

2017

Social Science & Medicine

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Community researchers are laypersons who conduct research activities in their own communities. In addiction and HIV research, community researchers are valued for their insider status and knowledge. At the same time, their presence on the research team raises concerns about coercion and confidentiality when community researchers and participants know each other personally, and the work of navigating between the worlds of research and community leads to moral distress and burnout for some community researchers. In this paper, we draw upon the concept of ‘moral experience’ to explore the local moral worlds of community researchers in the context of addiction research. In February and March, 2010, we conducted focus groups with 36 community researchers employed on community-based addiction studies in the United States to elicit perspectives on ethical and moral challenges they face in their work and insights on best practices to support their role in research. Community researchers described how their values were realized or thwarted in the context of research, and their strategies for coping with shifting identities and competing priorities. They delineated how their knowledge could be used to inform development of research protocols and help principal investigators build and maintain trust with the community researchers on their teams. Our findings contribute to current understandings of the moral experiences of community members employed in research, and inform policies and practices for the growing field of community-engaged research. Funders, research organizations, and research ethics boards should develop guidelines and standards to ensure studies have key resources in place to support community researchers and ensure quality and integrity of community-engaged work. Investigators who work with community researchers should ensure channels for frontline staff to provide input on research protocols and to create an atmosphere where challenges and concerns can be openly and safely discussed.

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The ethics of community-based research with people who use drugs: results of a scoping review

Cited by 64 publications

References 43 publications

Community-based participatory research in a heavily researched inner city neighbourhood: Perspectives of people who use drugs on their experiences as peer researchers

Community-based participatory research in a heavily researched inner city neighbourhood: Perspectives of people who use drugs on their experiences as peer researchers

Challenges to Studying Illicit Drug Users

Supporting the role of community members employed as research staff: Perspectives of community researchers working in addiction research

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