Community Engagement in Health Services Research on Soil-transmitted Helminthiasis in Asia Pacific Region: Systematic Review

"CE [community engagement] in research has gained popularity as an approach for enhancing research, ensuring that community concerns are taken into consideration, and it also inform ethical decision-making when research is undertaken in the context of vulnerability..."

Health systems and services remain largely designed, implemented, and evaluated through an expert-driven, top-down process without recognising the role of community engagement (CE) as a key factor of improving health and well being. However, the 2021-2030 global roadmap for neglected tropical diseases (NTDs) highlights CE as a key enabler and intervention to address NTDs such as soil-transmitted helminth infection (STH). Terms that are often used to describe CE in research include community-based participatory research, participatory action research, or collaborative partnership. This systematic review aimed to synthesise evidence on how communities were engaged in health services research (HSR) on STH in low- and middle-income countries (LMICs) of the Asia-Pacific Region. The burden if STH is significant in this region.

This review was conducted according to the Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) checklist. Relevant studies were searched in health-related databases including PubMed, Ovid, and Google Scholar. In the present review, communities were not limited to being defined as geographically constructed such as in villages but included social groups united by activities as well. Ten studies from seven countries in the Asia-Pacific region published between 2008 and 2021 were identified for this review. Three studies were conducted in Philippines, while two studies were conducted in Malaysia, and one study each was conducted in Cambodia, India, Indonesia, Laos, and the Solomon Islands. Albeit with variation in the extent of their involvement, various forms of communities/groups within communities were included, such as Aboriginal communities, local communities, schoolchildren and their parents, school teachers and headmasters, heads of villages, and religious leaders.

Overall, the majority of studies (8/10, 80%) were rated as having a moderate level of CE, and two studies demonstrated a low level of CE. Some details:

• In reflecting upon any engagement of communities in the research, studies described a range of different mechanisms. For instance, the majority (60%) was CE through small community meetings inclusive of stakeholders such as village heads, parents of schoolchildren, and school teachers. This approach may help: build trust between the researchers and the community, facilitate partnership, and provide researchers with local contextual information about the community. However, details about how these meetings were organised and managed, and how results from the meetings were incorporated into the research, were not discussed in these included studies. Other mechanisms were: provision of trainings to community members including village health workers (VHWs), local government staff, and community drug distributors, and provision of infrastructure and human resources (school teachers/headmasters).
• It was noted that none of the included studies had communities leading/collaborating at the developing ideas stage of the research. Instead, the communities in the studies were involved by being informed the objectives of the study before the commencement of the study. Six studies had collaboration at the developing methodology stage, again mainly in the form of an explanation about the objectives of the study or study process. Seven studies described community participation on STH at the data collection stage. One study documented that a community leader was involved as a co-author, reflecting an involvement at the report writing and further dissemination stage.

Seven studies in this review addressed drivers that facilitated CE in HSR targeting STH. For instance, studies in the Philippines highlighted that building confidence among school teachers and health workers to implement combined mass drug administration (MDA) facilitated their involvement. These studies also described how multisectoral stakeholder cooperation helped to conserve funds for the initial assessment and management of adverse events (i.e., assurances and rest) by engaging local health workers provided with sufficient orientation and training, rather than leveraging medical doctors.

Amongst the barriers identified was community members' doubts about the effectiveness of deworming drugs and their potential side effects, leading to their reduced involvement. Another barrier to CE was related to the communities' perceptions of the low quality of government-supplied drugs in the MDA compared to commercially available anthelminthics.

Overall, findings suggest that there was a moderate level of participation, but there was insufficient information on the partnership between various stakeholders that prevented in-depth analysis of the engagement. Future HSR on STH interventions needs to be carefully planned, well designed, grounded in principles of CE, and designed methodologically to allow in-depth participation by communities in all stages of the research.