Community Engagement Strategies Research Articles

A Risk Communication Strategy to Support Implementation Child Rights Protection Program: A Descriptive Qualitative Study in ALIT Indonesia Foundation during the COVID-19 Pandemic

During the pandemic COVID-19, the number of Child Rights violations have been increased such as sexual harassment, the exploitation of the children, and child abuse. Moreover, during the regulation such as “lockdown” that forced people to stay at home has been putting the children into another risks. Thus, it is important for Civil Society Organization (CSO) who works with the children to have its risk communication strategy in its Child Rights Protection (CRP) program implementation. This study is to address the risk communication and community engagement (RCCE) strategy in supporting the sustainability of CRP program implementation in ALIT Indonesia Foundation during pandemic COVID-19. The writer assumed that the organization has been applied a good strategy for its risk management. Moreover, using a descriptive qualitative research methods and data gathering from interview and literature review, it founds that the risk communication strategy adjustment applied by ALIT Indonesia Foundation on its CRP program implementation not only helped the organization in working with the children and their family as the target group, but also giving advocacy about the Child Rights to the stakeholders during pandemic COVID-19. The organization run some strategies based on the government’s health protocols during pandemic, such as physical distancing, wearing mask, hand washing. They also use social media such as Zoom, WhatsApp, Facebook, Instagram and YouTube to outreach their target group who live in the internet-accessible area, but for those who are living in the remote area, they had field staffs as the interconnector to their volunteer in the field, and spread the key messages of the CRP program through local radio station, or they gather the children of 4 who live nearby to disseminate the information.

The process of adapting a sexual health intervention for Black early adolescents: a stakeholder engagement approach.

Young Black women are disproportionately affected by sexually transmitted infections (STIs) and HIV. Notably, few sexual health interventions for Black girls have documented the process of utilizing stakeholder input from the Black community to culturally tailor content. We conducted formative work in Chicago to adapt a mother-daughter HIV/STI prevention intervention originally designed for Black adolescent girls aged 14-18 years to meet the needs of early adolescent girls aged 11-13 years. Our iterative process involved three phases: (i) soliciting feedback from an expert panel and community advisory board; (ii) conducting focus groups with experienced research participants; and (iii) theater testing a new curriculum in the target population. Key findings of this process indicate the importance of sophisticated community engagement strategies to shape research design and program implementation. Findings may be used to inform processes for future adaptation work, especially in sexual health programs for young Black girls and their mothers.

At-home testing to mitigate community transmission of SARS-CoV-2: protocol for a public health intervention with a nested prospective cohort study

BackgroundThe COVID-19 pandemic caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) continues to evolve as a global health crisis. Although highly effective vaccines have been developed, non-pharmaceutical interventions remain critical to controlling disease transmission. One such intervention—rapid, at-home antigen self-testing—can ease the burden associated with facility-based testing programs and improve testing access in high-risk communities. However, its impact on SARS-CoV-2 community transmission has yet to be definitively evaluated, and the socio-behavioral aspects of testing in underserved populations remain unknown.MethodsAs part of the Rapid Acceleration of Diagnostics–Underserved Populations (RADx-UP) program funded by the National Institutes of Health, we are implementing a public health intervention titled “Say Yes! COVID Test” (SYCT) involving at-home self-testing using a SARS-CoV-2 rapid antigen assay in North Carolina (Greenville, Pitt County) and Tennessee (Chattanooga City, Hamilton County). The intervention is supported by a multifaceted communication and community engagement strategy to ensure widespread awareness and uptake, particularly in marginalized communities. Participants receive test kits either through online orders or via local community distribution partners. To assess the impact of this intervention on SARS-CoV-2 transmission, we will conduct a non-randomized, ecological study using community-level outcomes. Specifically, we will evaluate trends in SARS-CoV-2 cases and hospitalizations, SARS-CoV-2 viral load in wastewater, and population mobility in each community before, during, and after the SYCT intervention. Individuals who choose to participate in SYCT will also have the option to enroll in an embedded prospective cohort substudy gathering participant-level data to evaluate behavioral determinants of at-home self-testing and socio-behavioral mechanisms of SARS-CoV-2 community transmission.DiscussionThis is the first large-scale, public health intervention implementing rapid, at-home SARS-CoV-2 self-testing in the United States. The program consists of a novel combination of an at-home testing program, a broad communications and community engagement strategy, an ecological study to assess impact, and a research substudy of the behavioral aspects of testing. The findings from the SYCT project will provide insights into innovative methods to mitigate viral transmission, advance the science of public health communications and community engagement, and evaluate emerging, novel assessments of community transmission of disease.

The dementia journey survey: A community engagement approach for inclusivity in dementia care research

AbstractBackgroundApproximately 560,000 people live with dementia (PLWD) in Canada, yet research on the experiences of ethnoculturally diverse people with dementia is largely unknown. As a result, healthcare programs and services do not reflect the dementia related needs of these communities. Additionally, 60% of primary care physicians indicated feeling uncomfortable supporting patients with dementia, despite being the first point of access for additional dementia healthcare. To address these gaps, a national collaboration was developed by the Alzheimer Society of Canada (ASC) and the College of Family Physicians of Canada (CFPC) to understand more diverse experiences of PLWD with their healthcare providers.MethodUsing a mixed methods design, paper and online surveys were created for PLWD and caregivers, and online surveys were created for family physicians. CFPC registered family physicians were invited to participate through professional channels. PLWD, and caregivers were recruited through Alzheimer Society provincial chapters and community partners. To ensure inclusivity of underrepresented populations, a targeted community engagement strategy was developed to connect with members of various ethnocultural groups across Canada using a multi‐tiered selection process of cultural community‐based organizations. Qualitative analysis will include thematic analysis using a standard process to code data and generate themes. Quantitative analysis will use descriptive statistics.ResultThis survey is the first of its kind in Canada that investigates the relationships between PLWD and caregivers with their primary health providers and utilizes a defined and consistent approach to community outreach and engagement. The survey bridges the knowledge gap in dementia care research, focusing on inclusivity of ethnocultural communities which has resulted in increased uptake of the survey and will provide richer data for resource creation.ConclusionFindings from the survey will inform the ASC‐CFPC collaboration in creating resources to increase physician comfort with managing all patients with dementia. It will also guide the development of new resources and educational materials for PLWD and caregivers. The community engagement strategy will help create and strengthen community relationships with ethnoculturally diverse communities through a mutual knowledge sharing and community building.

Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: Scoping Review.

BackgroundThe exponential growth of health information technology has the potential to facilitate community engagement in research. However, little is known about the use of health information technology in community-engaged research, such as which types of health information technology are used, which populations are engaged, and what are the research outcomes.ObjectiveThe objectives of this scoping review were to examine studies that used health information technology for community engagement and to assess (1) the types of populations, (2) community engagement strategies, (3) types of health information technology tools, and (4) outcomes of interest.MethodsWe searched PubMed and PCORI Literature Explorer using terms related to health information technology, health informatics, community engagement, and stakeholder involvement. This search process yielded 967 papers for screening. After inclusion and exclusion criteria were applied, a total of 37 papers were analyzed for key themes and for approaches relevant to health information technology and community engagement research.ResultsThis analysis revealed that the communities engaged were generally underrepresented populations in health-related research, including racial or ethnic minority communities such as Black/African American, American Indian/Alaska Native, Latino ethnicity, and communities from low socioeconomic backgrounds. The studies focused on various age groups, ranging from preschoolers to older adults. The studies were also geographically spread across the United States and the world. Community engagement strategies included collaborative development of health information technology tools and partnerships to promote use (encompassing collaborative development, use of community advisory boards, and focus groups for eliciting information needs) and use of health information technology to engage communities in research (eg, through citizen science). The types of technology varied across studies, with mobile or tablet-based apps being the most common platform. Outcomes measured included eliciting user needs and requirements, assessing health information technology tools and prototypes with participants, measuring knowledge, and advocating for community change.ConclusionsThis study illustrates the current landscape at the intersection of health information technology tools and community-engaged research approaches. It highlights studies in which various community-engaged research approaches were used to design culturally centered health information technology tools, to promote health information technology uptake, or for engagement in health research and advocacy. Our findings can serve as a platform for generating future research upon which to expand the scope of health information technology tools and their use for meaningful stakeholder engagement. Studies that incorporate community context and needs have a greater chance of cocreating culturally centered health information technology tools and better knowledge to promote action and improve health outcomes.

Bringing the social into vaccination research: Community-led ethnography and trust-building in immunization programs in Sierra Leone.

BackgroundVaccine hesitancy is a complex, contested social phenomenon and existing research highlights the multifaceted role of trust in strengthening vaccine confidence. However, understanding public engagement with vaccination through the lens of (mis)trust requires more contextual evidence on trust’s qualitative determinants. This includes expanding the geographic focus beyond current studies’ focus on High Income Countries. Furthermore, obstacles remain in effectively integrating social science findings in the design of vaccine deployment strategies, and in ensuring that those who implement interventions and are affected by them are directly involved in producing knowledge about vaccination challenges.MethodsWe piloted a community-led ethnographic approach, training Community Health Workers (CHWs) in Kambia District, Sierra Leone, in qualitative social science methods. Methods included participant observation, participatory power mapping and rumour tracking, focus group discussions and key stakeholder interviews. CHWs, with the support of public health officials and professional social scientists, conducted research on vaccination challenges, analysed data, tested new community engagement strategies based on their findings and elicited local perspectives on these approaches.ResultsOur findings on vaccine confidence in five border communities highlighted three key themes: the impact of prior experiences with the health system on (mis)trust; relevance of livelihood strategies and power dynamics for vaccine uptake and access; and the contextual nature of knowledge around vaccines. Across these themes, we show how expressions of trust centered on social proximity, reliability and respect and the role of structural issues affecting both vaccine access and confidence. The pilot also highlighted the value and practical challenges to meaningfully co-designed research.ConclusionThere is scope for broader application of a community-led ethnographic approach will help redesign programming that is responsive to local knowledge and experience. Involving communities and low-cadre service providers in generating knowledge and solutions can strengthen relationships and sustain dialogue to bolster vaccine confidence.

Local public health professionals contribution to infodemic management

The digital age we currently live in is characterized by an overwhelming production of information by multiple users. This is particularly relevant in public health areas, where inaccurate information can be a threat to populations' wellbeing. The internet became a field where anyone can produce non validated health information and spread rumors that can drive vaccine hesitancy, non compliance with public health measures and use of ineffective treatments, among other consequences highlighted by the COVID-19 pandemic. Public health professionals must be aware of such relevant concepts, the cognitive theories that support them and the strategies that can be used to monitor, identify, prevent and tackle the spread of health misinformation. However, such an approach should involve not only public health professionals but also journalists, data scientists, social marketeers and behavioural change experts involved in different organizations. Infodemic management is a recent area of research and practice that requires a comprehensive, multidisciplinary capacity building approach focusing behavioural change theories, digital technologies and social media, and community engagement strategies among others. This presentation will provide a brief introduction on main infodemic concepts and cognitive theories, show how infodemic management can overlap common epidemic management and highlight monitoring and social listening strategies and relevant interventions to prevent and tackle misinformation.

The relevance of WHO support to member states in measuring and understanding behaviour insights during Covid-19 syndemic

Abstract WHO has developed approaches and activities in measuring pandemic fatigue. Member states were consulted on their needs in beginning October 2020. WHO proposed develop national action plans to measure pandemic fatigue, which should be based on the strategies and principles presented in the WHO document “Pandemic Fatigue - Reinvigorating the public to prevent COVID-19”, and on the basis of recommendations in WHO publications: “Risk communication and community engagement readiness and initial response for novel coronaviruses: interim guidance” and “Risk communication and community engagement strategy for COVID-19 template”. WHO has developed a tool for understanding behavior in COVID-19 (“WHO tool for behavioral insights on COVID-19”) in ten steps, with recommendations to countries on how to approach measuring and monitoring pandemic fatige. In doing so, WHO advises countries to establish a national response coordination mechanism involving a wide range of relevant stakeholders. Stakeholders should be involved in all ten steps of implementing the tool to understand people's behavior in relation to COVID-19. A “Survey tool and guidance: behavioural insights on COVID-19” was launched mid October 2020, supporting member states in organizing their Covid-19 fatigue linked surveying activities. Slovenia is running bi-weekly panel surveying (representative national sample of 1000 participants every 14 days) in 20 waves (dec2020/dec21), extensively exploring ineqalities linked to gender, age, socioeconimic status and others in bi-weekly reports. According to the feedback from member states, international dimension is very valuable for all member states. It is very important for them to have the venue for sharing experiences, challenges and strategies to overcome obstacles. New inequalities emerging from the Covid-19 syndemic will be presented in the next four presentations of the workshop.

A community engagement strategy to sustain safe drinking water in Guatemala

We sought to examine a community engagement (CE) strategy, defined as a monetary contribution, on water filter usage DESIGN: A natural, quasi-experimental study was conducted in Guatemala following the distribution of water filters. Households in the 2014-2015 group (free water filter) were compared with households in the 2018-2019 group (CE strategy: US$5.50 for water filter) SAMPLE: One-year post-distribution, the comparison group (n=56) and intervention group (n=38) completed a survey on family health and water filter use RESULTS: Households in the CE group had almost five times higher odds (OR=4.7, p=.022) of having a working water filter 1 year later. Using a multivariable logistic regression model, the single best predictor to explain working water filters was the CE strategy CONCLUSIONS: CE strategies that support ownership and dignity might sustain public health initiatives, in conjunction with collaborative international partnerships. Future research could include linking villages with local and international organizations that support safe drinking water initiatives.

Engaging rural communities in cancer prevention and control research: Development and preliminary insights from a community-based research registry.

ObjectiveTo report on the development and preliminary findings of a community‐based cancer registry, including the community‐engaged approach to recruitment, participant profile, and distribution of cancer risk factors by race/ethnicity and geography.MethodsCommunity outreach and engagement best practices were used to recruit a diverse convenience sample of Virginia residents (≥18 years) that oversampled residents living in rural areas, defined as Rural‐Urban Continuum Codes (RUCC) 4–9 and African American (AA)/Black residents. Multiple survey administration methods included electronic (e‐survey) and in‐person survey by community‐based staff.ResultsAt the time of this analysis, 595 participants are enrolled; 73% are rural, 46% are AA/Black. AA/Black participants reported similar education but lower income (p < 0.01) and health literacy (p < 0.01), lower alcohol use (p < 0.001), fewer sedentary behaviors (p = 0.01), but greater BMI (p < 0.05) compared to White participants. Rural residents reported significantly lower household income (p < 0.001) and greater use of Medicaid (p = 0.01) compared to urban participants. Biennial mammography was reported by 82% of women aged 45–74 years old and colonoscopy by 77% of participants ≥50 years old. Tobacco use was reported by 17%; no differences in cancer screening or tobacco use were identified by geography or by race.Conclusion and relevanceCommunity engagement strategies successfully enrolled diverse residents within the cancer service area. AA/Black participants reported fewer cancer risk behaviors, similar educational attainment but lower income and health literacy compared to White respondents. Nuanced examinations of interactions among multilevel factors are needed to understand how individual, community, and institutional factors converge to maintain cancer disparities among AA/Black Virginians. Additional findings indicate a need for tobacco cessation, lung cancer screening, obesity treatment, and prevention initiatives.

Moderating and mediating role of local government in the community engagement strategy of a renewable energy company in South Africa

Adopting a qualitative case study approach of a renewable energy company in South Africa, the research investigated community engagement within the tripartite relationship of a wind farm, the communities, and the local government. It was found that local government played a moderating role in the community engagement efforts of the wind farm which had to comply with certain engagement protocols determined by local government. Local government also played a mediating role in corporate community engagement, as the wind farm developed their engagement strategy in alignment with local government’s policies and acted as a ‘dot-connector’ between local government and communities. The wind farm played a reciprocal mediating role on local government’s own engagement with their communities in the face of local government’s inefficiencies and complemented service delivery outcomes. The wind farm’s engagement strategy thus enabled local development which was appreciated by communities and local government.

In search of the last malaria cases: ethnographic methods for community and private-sector engagement in malaria elimination in Vietnam, Laos, and Cambodia

BackgroundDespite significant strides made in reducing malaria morbidity and mortality in the Greater Mekong Subregion, malaria transmission continues amongst the most ‘hard-to-reach’, such as forest-goers and mobile and migrant populations, who face access obstacles to malaria diagnosis and treatment. As such, regional malaria elimination strategies endeavour to incorporate the private sector and local communities in improving surveillance and detection of the last malaria cases in remote forested areas. The question remains, however, whether such strategies can reach these hard-to-reach populations and effectively reduce their disproportionate burden of malaria. This paper evaluates the strategy of community and private sector engagement in a malaria elimination project in Vietnam, Laos, and Cambodia.MethodsEthnographic research, incorporating in-depth interviews, participant observations with informal discussions, and group discussions were conducted in Bu Gia Map commune, Binh Phuc province of Vietnam; in Phouvong district, Attapeu province of Laos; and, in nine newly established and informal communities in the provinces of Mondul Kiri, Steung Treng, Kratie, Kampong Thom, and Prah Vihear of Cambodia.ResultsDifferent types of factors limited or enhanced the effectiveness of the participatory approaches in the different settings. In Vietnam, inter-ethnic tensions and sensitivity around forest-work negatively affected local population’s health-seeking behaviour and consequent uptake of malaria testing and treatment. In Laos, the location of the project collaborative pharmacies in the district-centre were a mismatch for reaching hard-to-reach populations in remote villages. In Cambodia, the strategy of recruiting community malaria-workers, elected by the community members, did manage to reach the remote forested areas where people visited or stayed.Conclusions‘Hard-to-reach’ populations remain hard to reach without proper research identifying the socio-economic-political environment and the key dynamics determining uptake in involved communities and populations. Solid implementation research with a strong ethnographic component is required to tailor malaria elimination strategies to local contexts.

Assessing ecological knowledge, perceived agency, and motivations regarding wildlife and wildlife conservation in Samburu, Kenya

In international wildlife conservation programs, community engagement and incentivization strategies (e.g., wildlife-related employment, tourism income) typically reflect the ecological understandings and motivations of Western conservationists who design them. However, these views may not always be shared by people who live alongside wildlife and are the intended beneficiaries of the incentives. Such misalignments can undermine the effectiveness of conservation efforts to motivate pro-conservation behavior. In Samburu, Kenya, an area with multiple active international conservation programs, we sought to assess local residents' perspectives regarding three factors known to influence pro-environmental behavior: (a) ecological knowledge, including views on wildlife abundance and extinction risk; (b) perceptions of agency regarding wildlife conservation (here defined as the ability of humans to influence wildlife populations); and (c) personal motivations for wildlife conservation. We interviewed 74 residents and evaluated whether their perspectives aligned with the premises and assumptions that underpin the strategies commonly used by international organizations to promote wildlife conservation in the area. We found that concepts of rarity and extinction based on Western-based science were not salient in how residents thought about local wildlife populations. Consistent with core assumptions of Western conservation programs, however, most residents did feel a sense of agency to influence wildlife populations, and reported economic incentives as primary motivations for conservation. We conclude with cautionary notes regarding tacit assumptions made when promoting wildlife conservation in other cultures, and the ethics and potential unintended consequences of ‘motivation crowding’ by powerful exogenous agents.

Community engagement in genomic research: Proposing a strategic model for effective participation of indigenous communities.

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders' views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities.

Assessing community engagement in Nigeria polio eradication initiative: application of the Consolidated Framework for Implementation Research

ObjectiveThis study employed the Consolidated Framework for Implementation Research (CFIR) to assess factors that enhanced or impeded the implementation of community engagement strategies using the Nigerian polio programme as a...

Active case detection methods for crusted scabies and leprosy: A systematic review.

BackgroundCrusted scabies is endemic in some remote Aboriginal communities in the Northern Territory (NT) of Australia and carries a high mortality risk. Improvement in active case detection (ACD) for crusted scabies is hampered by a lack of evidence about best practice. We therefore conducted a systematic review of ACD methods for leprosy, a condition with similar ACD requirements, to consider how findings could be informative to crusted scabies detection.Methods and principle findingsWe conducted systematic searches in MEDLINE, CINAHL, Scopus and the Cochrane Database for Systematic Reviews for studies published since 1999 that reported at least one comparison rate (detection or prevalence rate) against which the yield of the ACD method could be assessed. The search yielded 15 eligible studies from 511. Study heterogeneity precluded meta-analysis. Contact tracing and community screening of marginalised ethnic groups yielded the highest new case detection rates. Rapid community screening campaigns, and those using less experienced screening personnel, were associated with lower suspect confirmation rates. There is insufficient data to assess whether ACD campaigns improve treatment outcomes or disease control.ConclusionThis review demonstrates the importance of ACD campaigns in communities facing the highest barriers to healthcare access and within neighbourhoods of index cases. The potential benefit of ACD for crusted scabies is not quantified, however, lessons from leprosy suggest value in follow-up with previously identified cases and their close contacts to support for scabies control and to reduce the likelihood of reinfection in the crusted scabies case. Skilled screening personnel and appropriate community engagement strategies are needed to maximise screening uptake. More research is needed to assess ACD cost effectiveness, impact on disease control, and to explore ACD methods capable of capturing the homeless and highly mobile who may be missed in household centric models.

Vaccine hesitancy for childhood vaccinations in urban slums of Bengaluru rural district, Karnataka

: Throughout the globe, vaccines have saved countless lives, improved health and wellbeing. Vaccine hesitancy at the individual and community level risks the public health consequences of vaccine-preventable disease outbreaks.1. To find out the proportion of vaccine hesitancy 2. To determine the factors contributing to vaccine hesitancy for childhood vaccinations in urban slums of Bengaluru Rural District, Karnataka. A community based cross sectional study was carried out in 8 urban slums of Bengaluru Rural District from August 2019 to September 2020. Children aged 0-59 months were primary subjects and mothers / primary caregivers of children 0-59 months were secondary study subjects. Data Collection was done using a predesigned, pretested questionnaire and by reviewing immunization cards. Data analysis was done using SPSS version 20. The association between Vaccine hesitancy and predictor variables was tested by using chi –square test. Vaccine hesitancy was present among 75% of the mothers / primary care givers. Main Reasons for Vaccine hesitancy reported were fear of vaccination side effects, sickness of child, unaware of availability of vaccines, felt unnecessary to get child vaccinated, The present study reported delay in vaccination for the birth dose of BCG (66%), Hepatitis B (40%); OPV (9%). Vaccine hesitancy was found to be more in nuclear families, low socio-economic class, in female children, birth order of 3 or higher, among mothers who had primary education and are homemakers. This difference was found to be statistically significant. Among the characteristics of children, the gender of the child and birth order was found to be significantly associated with vaccine hesitancy. One of the major reasons found in this study for Vaccine hesitancy was concern regarding safety. Therefore vaccination programmes and policies have to feature strong community engagement strategies to increase awareness about the vaccines and remove fears.

Evaluating Community Engagement Strategies to Manage Stigma in Two African Genomics Studies Involving People Living with Schizophrenia or Rheumatic Heart Disease.

In global health research and genomics research specifically, community engagement has gained prominence in enhancing ethical conduct, particularly in managing the risk of stigmatization, but there is minimal scientific evidence on how to do this effectively. This article reports on community engagement evaluation strategies in two African genomics studies: the Stigma in African Genomics Research study and the Genomics of Schizophrenia in South African Xhosa People (SAX) study. Within the Stigma in African Genomics Research study, a self-report rating scale and open-ended questions were used to track participant responses to an experiential theatre workshop. The workshop focused on participant experiences of living with schizophrenia or rheumatic heart disease (RHD). While the schizophrenia group reported more alienation and less stigma resistance than the RHD group, both groups demonstrated increased stigma resistance over time, after participating in the workshops. Hearing from others living with and managing the same illness normalised participants' own experiences and encouraged them. Within the SAX study, a short rating scale and qualitative feedback methods were used to evaluate a Mental Health Literacy Day targeting mental health stigma. Information talks about (i) the symptoms of schizophrenia and treatment options and (ii) the illness experiences of a patient in recovery were rated as the most helpful on the day. Audience members reported that these talks challenged negative perceptions about severe mental illness. Three important learnings emerged from these evaluations: firstly, integration of evaluation strategies at the research study planning phase is likely to promote more effective community engagement. Secondly, a combination of quantitative and qualitative methods that draw on simple descriptive statistics and thematic analysis can provide nuanced perspectives about the value of community engagement. Thirdly, such evidence is necessary in establishing and promoting the science of community engagement in genomics research and health research more broadly.

Perceived enablers and barriers of community engagement for vaccination in India: Using socioecological analysis.

BackgroundThere is high level policy consensus in India that community engagement (CE) improves vaccination uptake and reduces burden of vaccine preventable diseases. However, to date, vaccination studies in the country have not explicitly focused on CE as an outcome in and of itself. Therefore, this study sought to examine the barriers and enablers of community engagement for vaccination in India.MethodsEmploying qualitative methods, twenty-five semi-structured elite interviews among vaccine decisionmakers’ were triangulated with twenty-four national-level vaccine policy documents and researcher field notes (December 2017 to February 2018). Data collected for this study included perceptions and examples of enablers of and barriers to CE for vaccination uptake. Concepts, such as the absence of formal procedures or data collection approaches related to CE, were confirmed during document review, and a final convening to review study results was conducted with study respondents in December 2018 and January 2019 to affirm the general set of findings from this study. The Social Ecological Model (SEM) was used to organize and interpret the study findings.ResultsAlthough decisionmakers and policy documents generally supported CE, there were more CE barriers than facilitators in the context of vaccination, which were identified at all social-ecological levels. Interviews with vaccine decisionmakers in India revealed complex systemic and structural factors which affect CE for vaccination and are present across each of the SEM levels, from individual to policy. Policy-level enablers included decisionmakers’ political will for CE and policy documents and interviews highlighted social mobilization, whereas barriers were lack of a CE strategy document and a broad understanding of CE by decisionmakers. At the community level, dissemination of Social-behavioral Change Communication (SBCC) materials from the national-level to the states was considered a CE facilitator, while class, and caste-based power relations in the community, lack of family-centric CE strategies, and paternalistic attitude of decisionmakers toward communities (the latter reported by some NGO heads) were considered CE barriers. At the organizational level, partnerships with local organizations were considered CE enablers, while lack of institutionalized support to formalize and incentivize these partnerships highlighted by several decisionmakers, were barriers. At the interpersonal level, SBCC training for healthcare workers, sensitive messaging to communities with low vaccine confidence, and social media messaging were considered CE facilitators. The lack of strategies to manage vaccine related rumors or replicate successful CE interventions during the during the introduction and rollout of new vaccines were perceived as CE barriers by several decisionmakers.ConclusionData obtained for this study highlighted national-level perceptions of the complexities and challenges of CE across the entire SEM, from individual to systemic levels. Future studies should attempt to associate these enablers and barriers with actual CE outcomes, such as participation or community support in vaccine policy-making, CE implementation for specific vaccines and situations (such as disease outbreaks), or frequency of sub-population-based incidents of community resistance and community facilitation to vaccination uptake. There would likely be value in developing a population-based operational definition of CE, with a step-by-step manual on ‘how to do CE.’ The data from this study also indicate the importance of including CE indicators in national datasets and developing a compendium documenting CE best-practices. Doing so would allow more rigorous analysis of the evidence-base for CE for vaccination in India and other countries with similar immunization programs.

Engaging Latino parents: An outcome evaluation of the Academia de Cultura Latina Para Padres.

Social capital interventions have been linked to various health and well-being outcomes in children and families. This study evaluated the Academia de Cultura Latina Para Padres (ACLP), a grass roots women-led parent engagement program that aimed to increase its participants' understanding and access to information about their children's education to support their academic success. Cross-sectional data were collected from 100 Latino caregivers who were on average 40.3 (SD = 12.12) years old, participated in the ACLP program between September and November 2019, and had at least one child or grandchild who attended Rosa Parks Elementary School in San Diego, California. A paired t test and multiple linear regression were conducted to compare the participants' scores on a pretest and posttest. A thematic analysis approach was also used to code participant responses to open-ended workshop satisfaction questionnaires. Participants scored significantly higher on the posttest after participating in the ACLP program, and although we did not find a significant relationship between the participants' attendance and posttests, we found a significant relationship between their positive ratings of the workshops and posttest scores. Findings from this study can inform future parent involvement programs, strategies for community engagement and practice with Latino caregivers, and research.