A case study of HIV/AIDS services from community-based organizations during COVID-19 lockdown in China

COVID-19 posed unprecedented challenges to global health and reversed decades of hard-earned progress on health [34]. Our study was one of the first to survey and interview frontline CBO staff that serve PLHIV around China in the first year of the pandemic. The CBOs in our study varied in their operational size and their affiliations status with the CDC and clinics. While some work in urban centers with advanced economic development, others are located in rural districts. In both the survey and the focus group interview, the common themes were the challenges they faced unexpectedly when COVID-19 hit and how the strict lockdown added to their service scope and forced them to change service methodology. Our survey findings add to the growing literature on resilience of communities during a natural disaster and highlight the importance of networking, digital platforms, and operational flexibility among grass-root community organizations. The focus group interview with the CBOs further explained the mechanisms of coping and provided a much-needed reflection on the need for capability building for future pandemics or disasters.

Our study found that CBOs serving people living with HIV in China often had at least 5–10 years of experience working with local PLHIV and generally have good working knowledge and close collaborations with local public health agencies and medical institutions. This type of three-in-one network has proven to improve performance metrics on disease testing and detections among high-risk populations [35]. The community organizations also serve a diverse population, including PLHIV as well as people at higher risk for HIV, such as MSM and female sex workers, and routinely carry out services including health promotion, peer support, and treatment coordination. Many CBOs have volunteers from the local PLHIV or high-risk population, which enables them to conduct targeted outreach and build trust with their clients. This finding validates a community resilience theory [36] that named four primary sets of adaptive capacities as critical to community resilience: social capital, economic development, information and communication, and community competence. The social capital, community competency, and communication skills of the CBOs have helped the organizations to achieve high efficiency in HIV control with flexible working venues and low operating costs.

During emergencies, to build collective resilience, communities must create organizational linkages, boost and protect social supports, and plan for not having a plan – which requires flexibility, decision-making skills, and trusted sources of information that function in the face of unknowns [36]. Our study found that CBOs that can provide PLHIV with wider organizational connections and mobilize social support through flexible operation plans, had a pivotal role in building community resilience during COVID-19. For example, despite the fact that the National Center for AIDS/STD Control and Prevention of China’s CDC issued a special policy to facilitate ART treatment continuity among PLHIV at the early stage of the COVID-19 pandemic [37], travel restrictions under the COVID-19 lockdown still had a significant impact on PLHIV’s access to and the CBO’s ability to provide services, such as ART, testing, and other medical care [13]. Since the lockdown happened at Chinese New Year, a time when internal migration is at its peak and a large population visits their family away from where they work, many PLHIV found themselves stuck in places away from their routine care. Many who had to quarantine with their parents found themselves having to forgo privacy and to disclose to their parents and families for the first time that they needed HIV care [27, 38]. Meanwhile, most of the local staff at public health stations were redeployed to respond to COVID-19. CBOs found significant workload increase with new clients stranded in their location in need of HIV care, new demands to coordinate HIV treatment continuity and testing, and additional requests on peer support in this time of crisis. In response, many CBOs had to make quick decisions to switch their service online and to seek new connections with fellow organizations and new government agencies– with varying success as our survey showed. Similar to our study’s findings, a 2020 China AIDS Fund for NGOs and UNAIDS’s CBO survey found that 87% of community organizations set up their own hotlines and implemented flexible working hours for volunteers during the COVID-19 epidemic from February to April 2020, to provide AIDS-related services. Nearly half added express mailing services for delivery of HIV self-testing kits and medicine to their services [39].

The same UNAIDS survey revealed that some CBOs encountered difficulties in HIV/AIDS services during the peak of the pandemic during February and March of 2020. The main reasons for the service interruption were urban traffic control (86%) and CDC staff who were unable to support AIDS prevention work (51%) because of their participation in the prevention and control of the COVID-19 epidemic. By the end of April 2020, about 53% of community organizations had fully restored their services, and 42% had restored some services [39]. Our findings are in line with the scenario described in the UNAIDS report and found the most critical challenges to the CBOs to be a lack of funding, limited service provision methods, shortage of staff and PPE, limited medical resources, testing and medication delivery capacities, and lack of support and understanding from society at large. All these factors contributed to CBOs’ service disruption, in addition to the reasons identified by the UNAIDS survey.

Paton (2000) defined community resilience as the capacity to bounce back and use physical and economic resources effectively to aid recovery following exposure to hazards [40]. In an earlier report for UNAIDS, we found that as a vulnerable population, PLHIV faced unique challenges during the unexpected COVID-19 lockdowns [41]. However, they had better resiliency resources – the CBOs that had already served their community before the pandemic – compared to other vulnerable populations, such as migrant workers and people with disabilities in China [41]. To build stronger resilience in the face of future disaster situations, the CBOs in our study offered multiple suggestions that we can summarize into four recommendations: First, enhance CBOs network building both horizontally and vertically: horizontally among CBOs with similar missions across different geographic areas so that when PLHIV travel, they can rely on the network for the continuation of support; vertically between CBOs and multiple hierarchies of government and healthcare facilities for resource coordination. Such collaborations should be included in government-level emergency response plans and policies to ensure the continuation of support for PLHIVs.

Secondly, funding agencies should consider supporting CBOs’ capacity building in communication and technology upgrades so that CBOs can expand their digital direct service platforms and mobilize resources during a crisis.

Thirdly, CBOs should consider strengthening their volunteer base and building a workforce reserve for their community-based services to prepare for staff shortages during emergencies. CBOs can mobilize these local talents from various groups. One way is to empower PLHIV to become peer supporters/volunteers during emergencies. Their presence in an emergency response would benefit the utilization of community-based services, and reduce PLHIV’s unease to disclose their status and seek help. Another way to engage more talents to grassroot community governance is to provide CBO-based internships for college students and professional training institutes (e.g., to students of public health, medicine, sociology, or other related fields). Efforts should also be made to cultivate professional talent serving grassroot communities, adjust policies and incentive mechanisms, and encourage more experts to provide intellectual support for community governance. Encouraging the public to participate in grassroots social governance can also help empower community members and generate increased cohesion and community resilience.

Finally, the CBOs’ capacity building should include a community-level emergency response plan. Education on disaster prevention and mitigation at the community level should be strengthened, and communities with excellent emergency response and disaster relief operations should be promoted as models, so their experiences can be shared. Bureaucratically and institutionally, the division of labor in emergency response and community governance should be further clarified, and community staff should receive training in emergency planning and response, to provide speedy and efficient public service when faced with future uncertainties and emergencies.

The findings of this study should be viewed in the context of several limitations. First, the study survey was cross-sectional. Therefore, causal inference could not be established, and the results can only reflect the situation of CBOs during a certain period during the pandemic. Second, the study only analyzed 29 responses from different CBOs and their operational branches, utilizing the connections of HRR. The limited number of participants and the recruitment method may have led to biased results, as the selected CBOs might not be representative of the population. Third, all information in the study was self-reported by one manager of each CBO, thus is subject to risk of bias.