The Integration of Social Science for Community Engagement in the Humanitarian Fields of Conflicts and Disasters: A Scoping Review.

Community engagement (CE) is essential to humanitarian assistance, and the social sciences have been credited in recent epidemics and disease outbreaks as having played a crucial, supportive role. Broadening this attention to other humanitarian fields, this scoping review asks what lessons learned can be found in grey and peer-reviewed literature on the integration of the social sciences in CE for conflicts and disasters. Using an analytical framework developed through a UNICEF-led project called Social Science for Community Engagement (SS4CE) in Humanitarian Action, we identified 1093 peer reviewed publications and 315 grey literature reports of possible relevance. The results show that only a small minority-18 publications and 4 reports-tangibly comment on the relevance of social sciences, mostly only in passing and implicitly. While social science techniques are used and the importance of understanding a community's cultural, linguistic, and religious context is emphasized, further discussion on the integration of transdisciplinary and multidisciplinary social sciences is absent. Furthermore, CE is mostly seen as an instrumental ('means to an end') involvement, for example to collect data in emergency situations and receive feedback on interventions, but not as a critical and transformative intervention. We conclude that unlike the attention given to social sciences in disease outbreaks, there is a knowledge gap and an accordingly proper planning and implementation gap regarding the potentiality of social science to improve CE across all humanitarian contexts of disasters and conflicts.

Friendship during patients' stable and unstable phases of incurable cancer: a qualitative interview study.

OBJECTIVES: Little is known about the added value of friendship during the care of intensive cancer disease trajectories. Friends, however, can play an important (caring-)role to increase their friends' (mental) well-being. We explored the experiences and desires of friends while their ill friends were-most of the time-in a stable phase of incurable cancer. DESIGN: Qualitative study in the Netherlands based on 14 in-depth interviews with friends of patients living with incurable cancer. Interviews were performed at the home setting or the friend's office. Data gathering was inspired by grounded theory and analysed with a thematic analysis. SETTING: The home setting/friend's office. RESULTS: Friends reported to experience difficulties in how and how often they wanted to approach their ill friends. They emphasised the ever-present knowledge of cancer inside their friends' body as a 'time bomb'. They seemed to balance between the wish to take care for their ill friend, having a good time and not knowing what their ill friend desired at specific times. Some friends felt burdened with or forced to provide more care than they could, although they acknowledged that this relationship provided space to reflect about their own life. CONCLUSIONS: Friends are constantly negotiating and renegotiating their relationship depending on the severity of the disease, transparency of patients about their illness, their previous experiences and personal circumstances in life. Although a decrease in friendship may impact a patient's quality of life, friends also need to be protected against providing more care than they are willing or able to give. Healthcare professionals, being aware of this phenomenon, can assist in this.

Village health workers as health diplomats: negotiating health and study participation in a malaria elimination trial in The Gambia.

BACKGROUND: Although many success stories exist of Village Health Workers (VHWs) improving primary health care, critiques remain about the medicalisation of their roles in disease-specific interventions. VHWs are placed at the bottom of the health system hierarchy as cheap and low-skilled volunteers, irrespective of their highly valued social and political status within communities. In this paper, we shed light on the political role VHWs play and investigate how this shapes their social and medical roles, including their influence on community participation. METHOD: The study was carried out within the context of a malaria elimination trial implemented in rural villages in the North Bank of The Gambia between 2016 and 2018. The trial aimed to reduce malaria prevalence by treating malaria index cases and their potentially asymptomatic compound members, in which VHWs took an active role advocating their community and the intervention, mobilising the population, and distributing antimalarial drugs. Mixed-methods research was used to collect and analyse data through qualitative interviews, group discussions, observations, and quantitative surveys. RESULTS AND DISCUSSION: We explored the emic logic of participation in a malaria elimination trial and found that VHWs played a pivotal role in representing their community and negotiating with the Medical Research Council to bring benefits (e.g. biomedical care service) to the community. We highlight this representative role of VHWs as 'health diplomats', valued and appreciated by community members, and potentially increasing community participation in the trial. We argue that VHWs aspire to be politically present and be part of the key decision-makers in the community through their health diplomat role. CONCLUSION: It is thus likely that in the context of rural Gambia, supporting VHWs beyond medical roles, in their social and political roles, would contribute to the improved performance of VHWs and to enhanced community participation in activities the community perceive as beneficial.

The limited state of training on the social dimensions of antimicrobial resistance.

BACKGROUND: Training is needed to increase awareness and understanding of the complex problem of antimicrobial resistance (AMR) among professionals. However, AMR capacity building often does not stretch beyond the biomedical sciences, limiting interdisciplinary collaboration. OBJECTIVES: Considering the relevance of including the social sciences, this scoping review assesses the state of training on the social dimensions of AMR. METHODS: Twenty-eight training courses covering social dimensions of AMR were identified via a survey (n = 133), interviews (n = 6) and an additional internet search. General characteristics, quality and social science relevance indicators were extracted and analysed for each of these training courses. RESULTS: Because only 57% of the analysed training courses were fully focused on AMR, AMR was usually superficially covered, focusing on the biomedical basics and just mentioning some social aspects without using social science theories or experts. Only 3 of the 28 training courses covered AMR primarily from a social science perspective, while only 14% of the educators involved had social science expertise. Biomedical dimensions of AMR were covered twice as much as the social science dimensions. In the social science domain, institution and policy elements are most frequently covered, while transformations are the least covered. CONCLUSIONS: There is a clear gap in educational resources on AMR, but moreover for social scientists wanting to engage in AMR, or for non-social scientists wanting to learn about the social dimensions of AMR from an interdisciplinary perspective. This gap needs to be bridged if we want social sciences to become a relevant partner in the struggle against AMR.

Public health preparedness and response synergies between institutional authorities and the community: a qualitative case study of emerging tick-borne diseases in Spain and the Netherlands.

BACKGROUND: Communities affected by infectious disease outbreaks are increasingly recognised as partners with a significant role to play during public health emergencies. This paper reports on a qualitative case study of the interactions between affected communities and public health institutions prior to, during, and after two emerging tick-borne disease events in 2016: Crimean-Congo Haemorrhagic Fever in Spain, and Tick-Borne Encephalitis in the Netherlands. The aim of the paper is to identify pre-existing and emergent synergies between communities and authorities, and to highlight areas where synergies could be facilitated and enhanced in future outbreaks. METHODS: Documentary material provided background for a set of semi-structured interviews with experts working in both health and relevant non-health official institutions (13 and 21 individuals respectively in Spain and the Netherlands), and focus group discussions with representatives of affected communities (15 and 10 individuals respectively). Data from all sources were combined and analysed thematically, initially independently for each country and then for both countries together. RESULTS: Strong synergies were identified in tick surveillance activities in both countries, and the value of pre-existing networks of interest groups for preparedness and response activities was recognised. However, authorities also noted that there were hard-to-reach and potentially vulnerable groups, such as hikers, foreign tourists, and volunteers working in green areas. While the general population received preventive information about the two events, risk communication or other community engagement efforts were not seen as necessary specifically for these sub-groups. Post-event evaluations of community engagement activities during the two events were limited, so lessons learned were not well documented. CONCLUSIONS: A set of good practices emerged from this study, that could be applied in these and other settings. They included the potential value of conducting stakeholder analyses of community actors with a stake in tick-borne or other zoonotic diseases; of utilising pre-existing stakeholder networks for information dissemination; and of monitoring community perceptions of any public health incident, including through social media. Efforts in the two countries to build on the community engagement activities that are already in place could contribute to better preparedness planning and more efficient and timely responses in future outbreaks.

The Community Lab of Ideas for Health: Community-Based Transdisciplinary Solutions in a Malaria Elimination Trial in The Gambia.

Background: Community participation in global health interventions may improve outcomes and solve complex health issues. Although numerous community participatory approaches have been developed and introduced, there has been little focus on "how" and "who" to involve in the implementation of community-based clinical trials where unequal distribution of power between implementers and communities pre-exists. Addressing how to achieve community-based solutions in a malaria elimination trial in The Gambia, we developed the Community Lab of Ideas for Health (CLIH): a participatory approach that enabled communities to shape trial implementation. Methods: As part of transdisciplinary research, we conducted qualitative research with in-depth interviews, discussions, and observations in 17 villages in the North Bank Region of The Gambia between March 2016 and December 2017. We designed an iterative research process involving ethnography, stakeholder-analysis, participatory-discussions, and qualitative monitoring and evaluation, whereby each step guided the next. We drew upon ethnographic results and stakeholder-analysis to identify key-informants who became participants in study design and implementation. The participatory-discussions provided a co-creative space for sharing community-centric ideas to tackle trial implementation challenges. The proposed strategies for trial implementation were continuously refined and improved through our monitoring and evaluation. Results: The CLIH incorporated communities' insights, to co-create tailored trial implementation strategies including: village health workers prescribing and distributing antimalarial treatments; "compounds" as community-accepted treatment units; medicine distribution following compound micro-politics; and appropriate modes of health message delivery. Throughout the iterative research process, the researchers and communities set the common goal, namely to curtail the medical poverty trap by reducing malaria transmission and the burden thereof. This innovative collaborative process built trust among stakeholders and fully engaged researchers and communities in co-creation and co-implementation of the trial. Discussion: The CLIH approach succeeded in touching the local realities by incorporating a spectrum of perspectives from community-members and discerning project-derived knowledge from local-knowledge. This process allowed us to co-develop locally-oriented solutions and ultimately to co-establish an intervention structure that community-members were ready and willing to use, which resulted in high uptake of the intervention (92% adherence to treatment). Successfully, the CLIH contributed in bridging research and implementation.

The Pandemic beyond the Pandemic: A Scoping Review on the Social Relationships between COVID-19 and Antimicrobial Resistance.

The social sciences are essential to include in the fight against both public health challenges of antimicrobial resistance (AMR) and COVID-19. In this scoping review, we document what social science knowledge has been published about the social relationship between COVID-19 and AMR and which social science interventions are suggested to address this social relationship. We analysed 23 peer-reviewed articles published between 2019 and 2021. Results emphasize that changes in antibiotic prescription behaviour, misinformation, over-burdened health systems, financial hardship, environmental impact and gaps in governance might increase the improper access and use of antibiotics during the COVID-19 pandemic, increasing AMR. The identified social sciences transformation strategies include social engagement and sensitisation, misinformation control, health systems strengthening, improved infection prevention and control measures, environmental protection, and better antimicrobial stewardship and infectious diseases governance. The review emphasizes the importance of interdisciplinary research in addressing both AMR and COVID-19.

Understanding adherence to reactive treatment of asymptomatic malaria infections in The Gambia.

The impact of different types of reactive case detection and/or treatment strategies for malaria elimination depends on high coverage and participants' adherence. However, strategies to optimise adherence are limited, particularly for people with asymptomatic or no infections. As part of a cluster-randomized trial to evaluate the effect of reactive treatment in The Gambia, all residents in the compound of a diagnosed clinical malaria patient received dihydro-artemisinin-piperaquine (DP). Using a mixed method approach, we assessed which factors contribute to adherence among the contacts of malaria cases that showed no symptoms. Adherence was defined as the proportion of compound members that (1) returned all medicine bags empty and (2) self-reported (3-day) treatment completion. Among the 273 individuals from 14 compounds who received DP, 227 (83.1%) were available for and willing to participate in the survey; 85.3% (233/273) returned empty medicine bags and 91.6% (208/227) self-reported treatment completion. Although clinical malaria was not considered a major health problem, reported adherence was high. The drivers of adherence were the strong sense of responsibility towards protecting the individual, compound and the village. Adherence can be optimised through a transdisciplinary implementation research process of engaging communities to bridge the gap between research goals and social realities.

Loneliness and Mental Health During the COVID-19 Pandemic: A Study Among Dutch Older Adults.

OBJECTIVES: With the spread of COVID-19, the Netherlands implemented a policy to keep citizens physically distanced. We hypothesize that consequent reduction in the frequency of social contacts, personal losses, and the experience of general threats in society reduced well-being. METHODS: Data were collected from 1,679 Dutch community-dwelling participants aged 65-102 years comprising a longitudinal online panel. Social and emotional loneliness and mental health were measured in May 2020, that is, 2 months after the implementation of the measures, and earlier in October and November 2019. RESULTS: In this pandemic, the loneliness of older people increased, but mental health remained roughly stable. The policy measures for physical distancing did not cause much social isolation but personal losses, worries about the pandemic, and a decline in trust in societal institutions were associated with increased mental health problems and especially emotional loneliness. DISCUSSION: The consequences of long-term social isolation and well-being must be closely monitored.

Integrating the social sciences in epidemic preparedness and response: A strategic framework to strengthen capacities and improve Global Health security.

BACKGROUND: The importance of integrating the social sciences in epidemic preparedness and response has become a common feature of infectious disease policy and practice debates. However to date, this integration remains inadequate, fragmented and under-funded, with limited reach and small initial investments. Based on data collected prior to the COVID-19 pandemic, in this paper we analysed the variety of knowledge, infrastructure and funding gaps that hinder the full integration of the social sciences in epidemics and present a strategic framework for addressing them. METHODS: Senior social scientists with expertise in public health emergencies facilitated expert deliberations, and conducted 75 key informant interviews, a consultation with 20 expert social scientists from Africa, Asia and Europe, 2 focus groups and a literature review of 128 identified high-priority peer reviewed articles. We also analysed 56 interviews from the Ebola 100 project, collected just after the West African Ebola epidemic. Analysis was conducted on gaps and recommendations. These were inductively classified according to various themes during two group prioritization exercises. The project was conducted between February and May 2019. Findings from the report were used to inform strategic prioritization of global investments in social science capacities for health emergencies. FINDINGS: Our analysis consolidated 12 knowledge and infrastructure gaps and 38 recommendations from an initial list of 600 gaps and 220 recommendations. In developing our framework, we clustered these into three areas: 1) Recommendations to improve core social science response capacities, including investments in: human resources within response agencies; the creation of social science data analysis capacities at field and global level; mechanisms for operationalizing knowledge; and a set of rapid deployment infrastructures; 2) Recommendations to strengthen applied and basic social sciences, including the need to: better define the social science agenda and core competencies; support innovative interdisciplinary science; make concerted investments in developing field ready tools and building the evidence-base; and develop codes of conduct; and 3) Recommendations for a supportive social science ecosystem, including: the essential foundational investments in institutional development; training and capacity building; awareness-raising activities with allied disciplines; and lastly, support for a community of practice. INTERPRETATION: Comprehensively integrating social science into the epidemic preparedness and response architecture demands multifaceted investments on par with allied disciplines, such as epidemiology and virology. Building core capacities and competencies should occur at multiple levels, grounded in country-led capacity building. Social science should not be a parallel system, nor should it be "siloed" into risk communication and community engagement. Rather, it should be integrated across existing systems and networks, and deploy interdisciplinary knowledge "transversally" across all preparedness and response sectors and pillars. Future work should update this framework to account for the impact of the COVID-19 pandemic on the institutional landscape.

Framework for Participatory Quantitative Health Impact Assessment in Low- and Middle-Income Countries.

BACKGROUND: Conducting health impact assessments (HIAs) is a growing practice in various organizations and countries, yet scholarly interest in HIAs has primarily focused on the synergies between exposure and health outcomes. This limits our understanding of what factors influence HIAs and the uptake of their outcomes. This paper presents a framework for conducting participatory quantitative HIA (PQHIA) in low- and middle-income countries (LMICs), including integrating the outcomes back into society after an HIA is conducted. The study responds to the question: what are the different components of a participatory quantitative model that can influence HIA implementation in LMICs? METHODS: To build the framework, we used a case study from a PQHIA fieldwork model developed in Port Louis (Mauritius). To explore thinking on the participatory components of the framework, we extract and analyze data from ethnographic material including fieldnotes, interviews, focus group discussions and feedback exercises with 14 stakeholders from the same case study. We confirm the validity of the ethnographic data using five quality criteria: credibility, transferability, dependability, confirmability, and authenticity. We build the PQHIA framework connecting the main HIA steps with factors influencing HIAs. RESULTS: The final framework depicts the five standard HIA stages and summarizes participatory activities and outcomes. It also reflects key factors influencing PQHIA practice and uptake of HIA outcomes: costs for participation, HIA knowledge and interest of stakeholders, social responsibility of policymakers, existing policies, data availability, citizen participation, multi-level stakeholder engagement and multisectoral coordination. The framework suggests that factors necessary to complete a participatory HIA are the same needed to re-integrate HIA results back into the society. There are three different areas that can act as facilitators to PQHIAs: good governance, evidence-based policy making, and access to resources. CONCLUSIONS: The framework has several implications for research and practice. It underlines the importance of applying participatory approaches critically while providing a blueprint for methods to engage local stakeholders. Participatory approaches in quantitative HIAs are complex and demand a nuanced understanding of the context. Therefore, the political and cultural contexts in which HIA is conducted will define how the framework is applied. Finally, the framework underlines that participation in HIA does not need to be expensive or time consuming for the assessor or the participant. Yet, participatory quantitative models need to be contextually developed and integrated if they are to provide health benefits and be beneficial for the participants. This integration can be facilitated by investing in opportunities that fuel good governance and evidence-based policy making.

Social networks for health communication in rural Uganda: A mixed-method analysis of Dekabusa Trading Centre, Luwero County.

To reach the most vulnerable individuals in under-resourced countries, health communication interventions increasingly move towards the community level. However, little is known about how health information spreads through local social networks. This paper maps the health information network of a rural trading centre in Uganda. As part of a five-year ethnographic study of sustainable community health resources, ego networks were obtained for 231 village residents in March 2014. Using both ethnographic and social network data, we analyze how the village social network is structured, and how this structure may influence the transmission of health information. Results show a network with low average proximity, with a small number of individuals, notably key administrative officials, much closer connected to many other community members than average. However, because of social partitioning in the village network, a number of people are outside the social clusters in which the top influencers are located.

Methodology for assessment of public health emergency preparedness and response synergies between institutional authorities and communities.

BACKGROUND: This paper describes a participatory methodology that supports investigation of the synergistic collaboration between communities affected by infectious disease outbreak events and relevant official institutions. The core principle underlying the methodology is the recognition that synergistic relationships, characterised by mutual trust and respect, between affected communities and official institutions provide the most effective means of addressing outbreak situations. METHODS: The methodological approach and lessons learned were derived from four qualitative case studies including (i) two tick-borne disease events (Crimean-Congo haemorrhagic fever in Spain, 2016, and tick-borne encephalitis in the Netherlands, 2016); and (ii) two outbreaks of acute gastroenteritis (norovirus in Iceland, 2017, and verocytotoxin-producing Escherichia coli [VTEC] in Ireland, 2018). An after-event qualitative case study approach was taken using mixed methods. The studies were conducted in collaboration with the respective national public health authorities in the affected countries by the European Centre for Disease Prevention and Control (ECDC). The analysis focused on the specific actions undertaken by the participating countries' public health and other authorities in relation to community engagement, as well as the view from the perspective of affected communities. RESULTS: Lessons highlight the critical importance of collaborating with ECDC National Focal Points during preparation and planning and with anthropological experts. Field work for each case study was conducted over one working week, which although limiting the number of individuals and institutions involved, still allowed for rich data collection due to the close collaboration with local authorities. The methodology enabled efficient extraction of synergies between authorities and communities. Implementing the methodology required a reflexivity among fieldworkers that ackowledges that different versions of reality can co-exist in the social domain. The method allowed for potential generalisability across studies. Issues of extra attention included insider-outsider perspectives, politically sensitivity of findings, and how to deal with ethical and language issues. CONCLUSIONS: The overall objective of the assessment is to identify synergies between institutional decision-making bodies and community actors and networks before, during and after an outbreak response to a given public health emergency. The methodology is generic and could be applied to a range of public health emergencies, zoonotic or otherwise.

Systematic Literature Review of Health Impact Assessments in Low and Middle-Income Countries.

Health Impact Assessments (HIAs) motivate effective measures for safeguarding public health. There is consensus that HIAs in low and middle-income countries (LMICs) are lacking, but no study systematically focuses on those that have been successfully conducted across all regions of the world, nor do they highlight factors that may enable or hinder their implementation. Our objectives are to (1) systematically review, geographically map, and characterize HIA activity in LMICs; and (2) apply a process evaluation method to identify factors which are important to improve HIA implementation in LMICs. A systematic review of peer-reviewed HIAs in 156 LMICs was performed in Scopus, Medline, Web of Science, Sociological abstracts, and LILACs (Latin American and Caribbean Health Sciences) databases. The search used PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and covered HIAs across all type of interventions, topics, and health outcomes. HIAs were included if they reported a clear intervention and health outcome to be assessed. No time restriction was applied, and grey literature was not included. The eligible studies were subjected to six process evaluation criteria. The search yielded 3178 hits and 57 studies were retained. HIAs were conducted in 26 out of 156 countries. There was an unequal distribution of HIAs across regions and within LMICs countries. The leading topics of HIA in LMICs were air pollution, development projects, and urban transport planning. Most of the HIAs reported quantitative approaches (72%), focused on air pollution (46%), appraised policies (60%), and were conducted at the city level (36%). The process evaluation showed important variations in the way HIAs have been conducted and low uniformity in the reporting of six criteria. No study reported the time, money, and staff used to perform HIAs. Only 12% of HIAs were based on participatory approaches; 92% of HIAs considered multiple outcomes; and 61% of HIAs provided recommendations and fostered cross-national collaboration. The limited transparency in process, weak participation, and inconsistent delivery of recommendations were potential limitations to HIA implementation in low and middle-income countries. Scaling and improving HIA implementation in low and middle-income countries in the upcoming years will depend on expanding geographically by increasing HIA governance, adapting models and tools in quantitative methods, and adopting better reporting practices.

Collaboration between key populations in a global partnership for health and human rights: Lessons learned from 'Bridging the Gaps'.

Because HIV and AIDS key populations share common social-cultural factors challenging their sexual health and rights (e.g. stigma, criminalisation), there is an assumed benefit of collaborative programmes where various key populations work in solidarity. In this paper, we reflect on how partners collaborated in a complex alliance of over 100 different NGOs, representing and supporting three key populations - lesbian, gay, bisexual and transgender (LGBT) people, sex workers and people who use drugs - working across 16 countries. We used a multiple-method approach of participant observation, qualitative interviews, and a survey to explore the benefits, facilitators and challenges of collaboration. Results show that motivators for collaboration included being part of the larger funding structure with applied impacts, a repressive human rights context, and intersectionality. Barriers for collaboration included identity politics, stigma, and constraints regarding the appropriate timing of new collaborations. Finally, facilitators include practical support for engagement, the framing of human rights in a medical agenda, and recognition of implicit differences. We conclude that for building the capacity for collaboration among socially marginalised groups it is important to develop trust and the ability to recognise strength in difference beyond the initial identification of shared norms and common goals.

Temporal Vulnerability and the Post-Disaster 'Window of Opportunity to Woo:' a Case Study of an African-American Floodplain Neighborhood after Hurricane Floyd in North Carolina.

After major flooding associated with Hurricane Floyd (1999) in North Carolina, mitigation managers seized upon the "window of opportunity" to woo residents to accept residential buyout offers despite sizable community resistance. I present a theoretical explanation of how post-crisis periods turn into "opportunities" based on a temporal referential theory that complements alternative explanations based on temporal coincidence, panarchy, and shock-doctrine theories. Results from fieldwork conducted from 2002 to 2004 illustrate how several temporal influences compromised collective calibration of "normalcy" in local cultural models, leading to an especially heightened vulnerability to collective surprise. Four factors particularly influenced this temporal vulnerability: 1) epistemological uncertainty of floodplain dynamics due to colonization; 2) cultural practices that maintained a casual amnesia; 3) meaning attributed to stochastic timing of floods; and 4) competitive impact of referential flood baseline attractors.

The Influence of Community Health Resources on Effectiveness and Sustainability of Community and Lay Health Worker Programs in Lower-Income Countries: A Systematic Review.

BACKGROUND: Despite the availability of practical knowledge and effective interventions required to reduce priority health problems in low-income countries, poor and vulnerable populations are often not reached. One possible solution to this problem is the use of Community or Lay Health Workers (CLHWs). So far, however, the development of sustainability in CLHW programs has failed and high attrition rates continue to pose a challenge. We propose that the roles and interests which support community health work should emerge directly from the way in which health is organized at community level. This review explores the evidence available to assess if increased levels of integration of community health resources in CLHW programs indeed lead to higher program effectiveness and sustainability. METHODS AND FINDINGS: This review includes peer-reviewed articles which meet three eligibility criteria: 1) specific focus on CLHWs or equivalent; 2) randomized, quasi-randomized, before/after methodology or substantial descriptive assessment; and 3) description of a community or peer intervention health program located in a low- or middle-income country. Literature searches using various article databases led to 2930 hits, of which 359 articles were classified. Of these, 32 articles were chosen for extensive review, complemented by analysis of the results of 15 other review studies. Analysis was conducted using an excel based data extraction form. Because results showed that no quantitative data was published, a descriptive synthesis was conducted. The review protocol was not proactively registered. Findings show minimal inclusion of even basic community level indicators, such as the degree to which the program is a community initiative, community input in the program or training, the background and history of CLHW recruits, and the role of the community in motivation and retention. Results show that of the 32 studies, only one includes one statistical measure of community integration. As a result of this lack of data we are unable to derive an evidence-based conclusion to our propositions. Instead, our results indicate a larger problem, namely the complete absence of indicators measuring community relationships with the programs studied. Studies pay attention only to gender and peer roles, along with limited demographic information about the recruits. The historicity of the health worker and the community s/he belongs to is absent in most studies reviewed. None of the studies discuss or test for the possibility that motivation emanates from the community. Only a few studies situate attrition and retention as an issue enabled by the community. The results were limited by a focus on low-income countries and English, peer-reviewed published articles only. CONCLUSION: Published, peer-reviewed studies evaluating the effectiveness and sustainability of CLHW interventions in health programs have not yet adequately tested for the potential of utilizing existing community health roles or social networks for the development of effective and sustainable (retentive) CLHW programs. Community relationships are generally seen as a "black box" represented by an interchangeable CLHW labor unit. This disconnect from community relationships and resources may have led to a systematic and chronic undervaluing of community agency in explanations of programmatic effectiveness and sustainability.

Linking communities to formal health care providers through village health teams in rural Uganda: lessons from linking social capital.

BACKGROUND: Community-based programmes, particularly community health workers (CHWs), have been portrayed as a cost-effective alternative to the shortage of health workers in low-income countries. Usually, literature emphasises how easily CHWs link and connect communities to formal health care services. There is little evidence in Uganda to support or dispute such claims. Drawing from linking social capital framework, this paper examines the claim that village health teams (VHTs), as an example of CHWs, link and connect communities with formal health care services. METHODS: Data were collected through ethnographic fieldwork undertaken as part of a larger research program in Luwero District, Uganda, between 2012 and 2014. The main methods of data collection were participant observation in events organised by VHTs. In addition, a total of 91 in-depth interviews and 42 focus group discussions (FGD) were conducted with adult community members as part of the larger project. After preliminary analysis of the data, we conducted an additional six in-depth interviews and three FGD with VHTs and four FGD with community members on the role of VHTs. Key informant interviews were conducted with local government staff, health workers, local leaders, and NGO staff with health programs in Luwero. Thematic analysis was used during data analysis. RESULTS: The ability of VHTs to link communities with formal health care was affected by the stakeholders' perception of their roles. Community members perceive VHTs as working for and under instructions of "others", which makes them powerless in the formal health care system. One of the challenges associated with VHTs' linking roles is support from the government and formal health care providers. Formal health care providers perceived VHTs as interested in special recognition for their services yet they are not "experts". For some health workers, the introduction of VHTs is seen as a ploy by the government to control people and hide its inability to provide health services. Having received training and initial support from an NGO, VHTs suffered transition failure from NGO to the formal public health care structure. As a result, VHTs are entangled in power relations that affect their role of linking community members with formal health care services. We also found that factors such as lack of money for treatment, poor transport networks, the attitudes of health workers and the existence of multiple health care systems, all factors that hinder access to formal health care, cannot be addressed by the VHTs. CONCLUSIONS: As linking social capital framework shows, for VHTs to effectively act as links between the community and formal health care and harness the resources that exist in institutions beyond the community, it is important to take into account the power relationships embedded in vertical relationships and forge a partnership between public health providers and the communities they serve. This will ensure strengthened partnerships and the improved capacity of local people to leverage resources embedded in vertical power networks.

The Vicious Cycle of Stigma and Disclosure in "Self-Management": A Study Among the Dutch HIV Population.

Though HIV has become a chronic disease, HIV-related stigma has remained. This article reports on a study that asked how Dutch people living with HIV-AIDS (PLWHA) experienced stigmatization and devised self-management strategies. We used qualitative findings from a survey questionnaire conducted among 468 Dutch HIV-positive people (3% of the population), using a stratified research sample. Findings show how respondents experience relatively high public (30%), self- (26%) and structural (15%) stigma. At the same time, results show the importance of selective disclosure as a self-management strategy. About half the respondents disclose selectively, while 16% does not disclose at all. We conclude that many Dutch PLHWA remain caught up in a vicious cycle of stigma and nondisclosure. To break the cycle, respondents point at the importance of stigma reduction campaigns using actual PLWHA. We highlight the importance of workplace programs and training of medical professionals.