Caveats and pitfalls associated with researching community engagement in the context of HIV vaccine trials

Kagee, Ashraf; Wet, Anneliese de; Kafaar, Zuhayr; Lesch, Anthea; Swartz, Leslie; Newman, Peter A.

doi:10.1177/1359105317745367

Cited by 11 publications

(8 citation statements)

References 28 publications

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“…Further, recurring incidents of vaccine backlash by communities, as demonstrated by skepticism, resistance, and lack of vaccine support, are often attributed to 'inappropriate CE' [12]. Despite this salutogenic understanding of CE, which has been hypothesized to be a pathway through which population health goals related to public health equity can be met [13], several studies have suggested that CE has not been clearly de ned or explicated in the context of vaccination programs [14,15]. It is important to understand how CE may be utilized to ensure that vaccines are translated into affordable and globally accessible public health solutions, which are acceptable by all communities [16,17,18].…”

Section: Introductionmentioning

confidence: 99%

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

Dutta

Meyerson

Agley

et al. 2020

Preprint

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Background: Globally, and in India, research has highlighted the importance of community engagement in achieving national vaccination goals and in promoting health equity. However, community engagement is not well-defined and remains an underutilized approach. There is also paucity of literature on community engagement’s effectiveness in achieving vaccination outcomes. To address that gap, this study interviewed Indian vaccination decisionmakers to derive a shared understanding of the evolving conceptualization of community engagement, and how it has been fostered during India’s Decade of Vaccines (2010-2020).Methods: Semi-structured interviews were conducted with 25 purposefully sampled national-level vaccine decisionmakers in India, including policymakers, immunization program heads, and vaccine technical committee leads. Participants were identified by their ‘elite’ status among decisionmakers in the Indian vaccination space. Schutz’ Social Phenomenological Theory guided development of an a priori framework derived from the Social Ecological Model. The framework helped organize participants’ conceptualizations of communities, community engagement, and related themes. Inter-rater reliability was computed for a subsample of coded interviews, and findings were validated in a one-day member check-in meeting with study participants and teams. Results: The interviews successfully elucidated participants’ understanding of key terminology (“community”) and approaches to community engagement propagated by the vaccine decisionmakers. Participants conceptualized ‘communities’ as vaccine-eligible children, their parents, frontline healthcare workers, and vaccination influencers. Engagement with those communities was understood to mean vaccine outreach, capacity-building of healthcare workers, and information dissemination. However, participants indicated that there were neither explicit policy guidelines defining community engagement nor pertinent evaluation metrics, despite awareness that community engagement is complex and under-researched. Examples of different approaches to community engagement ranged from vaccine imposition to empowered community vaccination decision-making. Finally, participants proposed an operational definition of community engagement and discussed concerns related to implementing it.Conclusions: Although decisionmakers had different perceptions about what constitutes a community, and how community engagement should optimally function, the combined group articulated its importance to ensure vaccination equity and reiterated the need for concerted political will to build trust with communities. At the same time, work remains to be done both in terms of research on community engagement as well as development of appropriate implementation and outcome metrics.

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Section: Introductionmentioning

confidence: 99%

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

Dutta

Meyerson

Agley

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

“…On the other hand, recurring incidents of vaccine backlash by communities as seen in their skepticism, resistance, and lack of vaccine support are often attributed to 'inappropriate CE' [12]. Despite this salutogenic understanding of CE, which has been hypothesized to be a pathway through which population health goals related to health equity can be met [13], several studies have suggested that CE has not been clearly de ned or explicated in the context vaccination programs [14,15]. Thus, understanding CE in the vaccination domain is important for an equitable understanding of how CE may be done for different populations such that e cacious vaccines are translated into affordable and globally accessible public health solutions, which are acceptable by all communities [16,17,18].…”

Section: Introductionmentioning

confidence: 99%

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

Dutta

Meyerson

Agley

et al. 2020

Preprint

View full text Add to dashboard Cite

Background: Globally, and in India, the research literature on vaccination highlights importance of community engagement in achieving national vaccination goals. However, community engagement, and “community” itself, are not well-defined and remains underutilized approach to realize health equity in this context. There is also paucity of literature on community engagement’s effectiveness in achieving vaccination outcomes. To address that gap, this study interviewed influential Indian vaccination decisionmakers to derive a shared understanding of the evolving conceptualization of community engagement, and how it has been fostered during India’s Decade of Vaccines (2010-2020).Methods: Semi-structured interviews were conducted with 25 purposefully sampled national-level vaccine decisionmakers in India, including policymakers, immunization program heads, and vaccine technical committee leads. Participants were identified by their ‘elite’ status among decisionmakers in the Indian vaccination space. Using Schutz’ Social Phenomenological theory, an a priori framework derived from the Social Ecological Model was used to guide coders’ conceptualizations of communities, community engagement, and related themes. Inter-rater reliability was computed for a subsample of coded interviews, and findings were validated in a one-day member check-in meeting with study participants and teams. Results: Interpretation of the data elucidated commonly-held understanding of terminology and engagement interventions by elite vaccine decisionmakers. Participants conceptualized ‘communities’ as vaccine-eligible children, their parents, frontline healthcare workers, and vaccination influencers. Engagement with those communities was understood to mean vaccine outreach, capacity-building of healthcare workers, and information dissemination. However, participants indicated that there were neither explicit policy guidelines defining community engagement nor pertinent evaluation metrics, despite awareness that community engagement is complex and under-researched. Examples of different approaches to community engagement ranged from vaccine imposition to empowered community vaccination decision-making. Finally, participants proposed an operational definition of community engagement and discussed concerns related to implementing it.Conclusions: Although decisionmakers had different perceptions about what constitutes a community, and how community engagement optimally should function, the combined group articulated its importance and reiterated the need for concerted political-will to build trust with communities. At the same time, work remains to be done both in terms of research on community engagement as well as development of appropriate implementation and outcome metrics.

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“…Although the importance of stakeholder engagement for HIV clinical trials is widely recognized, little is known about how engagement strategies are being implemented in this field. Existing literature is limited to examining the historical development of stakeholder engagement [15], exploring single sites of stakeholder engagement [16] and reviewing implementation challenges [17]. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to GPP benchmarks.…”

Section: Introductionmentioning

confidence: 99%

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

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IntroductionStakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.MethodsWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow‐up, results and dissemination.Results and discussionOf the 917 citations identified, 108 studies were included in the analysis. Forty‐eight studies (44.4%) described stakeholder engagement in high‐income countries, thirty (27.8%) in middle‐income countries and nine (8.3%) in low‐income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty‐five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV‐affected community stakeholders (e.g. people living with HIV, at‐risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post‐trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%).ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

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Caveats and pitfalls associated with researching community engagement in the context of HIV vaccine trials

Cited by 11 publications

References 28 publications

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

A qualitative analysis of vaccine decision-makers’ conceptualization and fostering of ‘community engagement’ in India

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

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