“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research

Safo, Stella; Cunningham, Chinazo O.; Beckman, Alice; Haughton, Lorlette J.; Starrels, Joanna L.

doi:10.1186/s12874-016-0181-8

Cited by 25 publications

(19 citation statements)

References 38 publications

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“…The domain of health research is traditionally typified by a relational power differential (Karnieli-Miller, Strier and Pessach 2009) resulting from asymmetries in information and perceived expertise (Safo et al 2016). This differential is expressed in how research is conducted, reported and funded (Sullivan et al 2001).…”

Section: Complexities Of Engaging Migrant Communities In Researchmentioning

confidence: 99%

An examination of how to engage migrants in the research process: building trust through an ‘insider’ perspective

et al. 2019

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An examination of how to engage migrants in the research process: Building trust through an 'insider' perspective Introduction: Ensuring all members of society can equally participate in research and the provision of services is a challenging goal. Increased migration has been mirrored by media narratives of social threat, leaving many migrants feeling differentiated and distrustful of mainstream society. Objectives: We explore how migrant and ethnic minority populations can be given the opportunity to participate in the research process. In this work, we iteratively and jointly developed a range of engagement strategies that adopt an 'insider' approach; seeking to eliminate feelings of differentiation and 'otherness' by establishing mutual trust. Design: Recruitment activities were carried out with 8 focus groups of first generation South Asian migrants (the largest ethnic minority group in England). Our analysis was grounded in the broad principles of action research with reflective evaluation of our recruitment process using field observations and relevant focus group data; asking whether we tackled barriers to engagement. Results: Our findings show that 'otherness' can be reduced by establishing a trustworthy researcher-community relationship, but also that this relationship is complex, and needs to acknowledge residual mistrust. Alongside, researchers need to enable opportunities for empowered interaction, with flexible strategies to negotiate potential power divides. Conclusions: We can successfully create opportunities for engagement but there is no 'one size fits all'. Engagement requires tailored approaches that embrace flexibility, and position both engagement and non-engagement as positive and empowered choices.

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Section: Complexities Of Engaging Migrant Communities In Researchmentioning

confidence: 99%

An examination of how to engage migrants in the research process: building trust through an ‘insider’ perspective

et al. 2019

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“…While evidence in the literature details advantages of CABs in strengthening community engagement, some studies have documented challenges faced by CABs. Some of the challenges include limited understanding of health research among CAB members [14]; inability to communicate scientific information and procedures [16]; monetary expectation and expectation of future employment [16]; dependence on research institutes or individual researchers for CAB finances and sustainability; a lack of authority to influence decisions concerning the research [14, 18] and a contradiction between the ethical mandate of the CAB and the CAB’s role in facilitating implementation of research [16]. These challenges often result in uncertainty about the advisory roles of CAB members and concerns that their involvement does not serve to adequately represent communities, but rather act as a superficial mechanism to adhere to donor requirements.…”

Section: Introductionmentioning

confidence: 99%

Experiences from a community advisory Board in the Implementation of early access to ART for all in Eswatini: a qualitative study

et al. 2019

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Background Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards (CABs) is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini (formerly known as Swaziland), which was implemented as part of the MaxART Early Access to ART for All study. Methods Trained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. Results The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: (1) promoting ethical conduct, in particular privacy, consent and confidentiality; (2) communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and (3) liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. Conclusion The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning.

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“…Tokenism is the “difference between…the empty ritual of participation and having the real power needed to affect the outcome,” (p.2) [ 39 ]. Ongoing reflection on the power dynamic between researchers and engaged patients, a central tenet of critical qualitative health research [ 40 , 41 ], can increase the likelihood that engagement involves equitable processes and will result in meaningful engagement experiences by patients rather than tokenism [ 36 , 42 ]. Patient engagement initiatives should strive for “partnership” amongst all team members, and not just reflect a patient-clinician or researcher-subject dynamic [ 43 ].…”

Section: Introductionmentioning

confidence: 99%

Using qualitative Health Research methods to improve patient and public involvement and engagement in research

et al. 2018

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Plain English summaryPatient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences.Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team.This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research.Abstract Background Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities. Discussion The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engag...

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“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research

Cited by 25 publications

References 38 publications

An examination of how to engage migrants in the research process: building trust through an ‘insider’ perspective

An examination of how to engage migrants in the research process: building trust through an ‘insider’ perspective

Experiences from a community advisory Board in the Implementation of early access to ART for all in Eswatini: a qualitative study

Using qualitative Health Research methods to improve patient and public involvement and engagement in research

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