Demographic Characteristics:
The study had 852 respondents, with a median age of 32 years (IQR 25–42), and the majority being female (n = 610, 73·05%). The study sample consisted mainly of household heads (n = 391, 46·5%), followed by spouses of household heads (n = 305, 36·1%) and children of the household head (n = 68, 8%). Approximately half reported being in a stable union, including marriage or cohabiting, and a significant proportion indicated tertiary education attainment (n = 206, 24·2%). This was followed by the primary education group (n = 201, 24·01%) and ordinary level (n = 195, 23·3%), while 16% (n = 142) had no formal education. The majority of participants reported access to clean running water at home or within their community, as well as access to electricity. Further neighborhood characteristics are detailed in Table 1 below.
Table 1
Neighborhood characteristics in study area
Neighbourhood characteristics | Frequency | % |
Mostly gated structures, well planned, clean neighbourhood | 87 | 10·27 |
Some gated structures, fairly well planned with fairly good sanitation, no congestion | 296 | 34·95 |
Very few if any gated structures; semi-planned with some signs of congestion or poor sanitation | 250 | 29·52 |
Slum dwellings with obvious signs of congestion and very poor sanitation | 214 | 25·27 |
Experiences in Conducting Research and Community Engagement During the Pandemic:
Throughout the research process from project planning to results dissemination, the study team encountered both challenges and opportunities. This paper focuses exclusively on the challenges encountered, while the opportunities are explored in another publication currently under preparation. The challenges are categorized into three main interrelated domains: a) implementation challenges b) social, cultural, and political context of the research, and c) budgetary and funding constraints.
Implementation Challenges:
Research Team Preparation for Community Engagement
Equipping the research team to interact with the public during a deadly airborne disease outbreak with no available preventive vaccine or treatment posed significant challenges. Each stage, from team selection to content design, demanded extensive consultation, policy and community engagement, flexibility, and creativity. Comprehensive and high-quality training covering a wide array of topics ranging from the specifics of the pandemic to study procedures, the rationale behind these procedures, strategies for engaging diverse populations, risk mitigation measures, and protocols for handling unforeseen circumstances became indispensable. Both theoretical and practical training required qualified trainers. Despite a rigorous six-week training period, surprises and unexpected challenges still arose in the field as discussed further below.
Methodological Challenges in Qualitative Data Collection
Qualitative data collection methods such as KII, IDIs, FGD, and HHC traditionally involve in-person, close-proximity interactions with participants. The pandemic's strict public health and social measures posed considerable challenges to these methods. While challenges in international research are well-documented, certain difficulties were encountered even in high-income settings. Conventional FGDs or HHCs do not typically involve maintaining a six-foot distance between respondents and researchers. Bringing people together for community engagement proved challenging during a period when public health measures were stringent. Additionally, the fact that every household member was at home made it difficult to find quiet, private spaces for interviews, potentially constraining the openness of some respondents. Furthermore, the public health measures (PHM) introduced confidentiality challenges, as participants had to project their voices more loudly in open spaces, inadvertently compromising privacy.
Challenges to Maintain Ethical Integrity and Scientific Rigor
Similar to many other regions, our Institutional Review Boards (IRBs) grappled with the formidable task of developing new research guidelines that effectively safeguarded the health and welfare of both community members and researchers. This challenge was further complicated by the imperative to expedite approval processes in order to keep pace with the rapidly evolving research landscape during the pandemic. The IRB also faced dilemmas regarding what was permissible as responsible conduct of research. This led to deliberations on various elements, including health insurance for research team members, the content of risk management plans, and the acceptability of photography, videography, and voice recording. The strict public health measures in place, such as physical distancing, made activities like photography, videography, and voice recording ethically complex, as they raised concerns related to invasion of privacy and participant confidentiality. Consequently, the pandemic and its associated public health measures challenged the research team's ability to fully comply with some of the ethical requirements. To overcome these challenges, it necessitated extra effort in the development and implementation of risk management plans.
Throughout the research process, our team diligently navigated the terrain to ensure ethical integrity and scientific rigor, focusing on several key aspects:
a) Upholding Participant Rights: We made it a priority to uphold participant rights, including the right to decline to answer specific questions. In instances where participants were less forthcoming during HHCs or FGDs, interviewers conducted follow-up discussions with individuals privately. The study had anticipated and prepared for such scenarios, allowing participants to engage RAs in a one-on-one setting and share additional information outside the group interview environment.
b) Ensuring Participant Privacy: The pandemic, in conjunction with PHM such as social distancing, amplified the challenge of preserving participant privacy during interviews. Conducting interviews while maintaining a six-foot distance between the interviewer and the participant proved particularly demanding in congested, low-income urban environments.
c) Prioritizing Researchers’ Welfare and Safety: The pandemic placed considerable strain on the principle of ensuring the welfare and safety of researchers. Despite having a planned risk mitigation strategy, unanticipated challenges emerged. RAs who contracted the virus experienced unforeseen side effects related to their knowledge of their status, including psychological impacts. Those who remained unaffected had to shoulder additional workloads, placing them at risk even though we provided them with all the necessary protection facilities. This dynamic underscored the necessity of adaptability in the face of an evolving situation.
We recognized the limitations of not collaborating with community groups, such as civil society organizations, cultural leaders, and religious leaders, who possessed prior knowledge and experience working within the study communities. These groups could have swiftly harnessed their capacity and existing networks to mobilize communities. Additionally, the principle of respect for communities necessitates researchers to "respect communal values, protect and empower social institutions, and, where relevant, respect the decisions of legitimate communal authorities." The government-imposed movement restrictions made it challenging to locate these leaders. Nevertheless, we made concerted efforts to engage some community leaders in their individual capacities.
Social Context Challenges:
The study unfolded amidst a dynamic social context characterized by communication and information excesses and overflow, a fluid political environment, economic strain, cultural norms and practices that carried psychological, gender, and cost related challenges for both the researchers and potential participants.
Challenges with Communication Channels
The pandemic introduced significant communication challenges, particularly concerning the channels through which information flowed. Social media and other communication platforms facilitated the spread of misinformation and disinformation, directly impacting the conduct of the study. In our study, most participants cited mass media platforms as their primary source of information. Person-to-person communication among friends or relatives was also prevalent (n = 791, 92·2%), followed by mainstream media such as television, radio, and newspapers (n = 624, 73·58%), and social media (n = 164, 19·34%). Notably, the majority of respondents mentioned receiving information from the president (n = 339, 39·98%), relatives (n = 266, 31·7%), friends (n = 252, 29·72%), government officials (n = 150, 17·69%), health workers (n = 100, 11·79%), local leaders (n = 60, 7·08%), and religious leaders (n = 33, 3·89%).
Social media and word-of-mouth played significant roles in disseminating information, contributing to COVID-19 infodemics characterized by widespread misinformation and disinformation. The public often distrusted information from official government sources, viewing it as deceptive and intended solely to secure donor support. Participants occasionally veered off-topic to discuss allegations of corruption, challenging the study staff to address such issues and affecting the interview's focus. In the early stages of the pandemic, when the public had not yet witnessed COVID-19 cases, community members found it difficult to believe in the existence of the pandemic. This widespread misinformation served as a real-time learning opportunity for the research team, prompting the development of measures to respond effectively. For the study, we relied on a WhatsApp group platform to facilitate real-time communication between the research team and community members.
Another notable aspect of communication channels was the emergence of specialized jargon among respondents with unique knowledge, such as traditional healers and sex workers. This jargon infiltrated public communication, including daily presidential speeches on pandemic updates, reflecting a shift in language and references within the community. The translation of messages into local languages also adapted to incorporate culturally relevant terminology. Therefore, the research team needed to remain attuned to new language or references related to common concepts like 'senyiga omukambwe' (a local term for COVID-19), masks, lockdown, quarantine, and curfew, as these were central to pandemic control activities. Additionally, some respondents utilized emerging language to discuss their pandemic experiences, reinforcing the importance of recognizing and accommodating evolving language and references during a pandemic.
Health Challenges:
It's important to highlight that while we had a comprehensive risk management plan (RMP) in place from the outset, which was reviewed by the IRB before ethical approval, the pandemic led to unforeseen health challenges within the research team. Several team members contracted COVID-19, triggering the immediate implementation of the RMP. This involved halting study activities and ensuring the infected individuals received care according to Ministry of Health PHM and Uganda National Council for Science and Technology (UNCST) guidelines. The direct consequence was a reduction in available staff, as six out of 25 team members required isolation. As a precautionary measure, all research activities were suspended for eight weeks. Face-to-face activities resumed only for project staff who had tested negative for SARS-CoV-2, resulting in increased workloads for the remaining team members. The news of infections among team members adversely affected morale and motivation. Unfortunately, while the RMP effectively addressed the outbreak within the team, it did not adequately address the social and psychological impact, particularly on the infected RAs.
Psychological Effects on Study Participants:
The pandemic affected the general community's mental well-being, with some participants expressing irritation toward COVID-related information or news. They attributed this irritation to the stress of lockdowns, absence of rapid and affordable tests, and perceived inadequacies in treatment options. Such experiences heightened panic and anxiety, exacerbated by sensational and controversial media coverage of the pandemic. Participants' anxiety related to news coverage was a notable challenge, as expressed by one respondent: "I know that the news increases my anxiety, but when I do not check it, I feel even more uncertainty."
Research challenges related to gender norms in resource constrained settings:
Our study primarily took place in low-income urban settings characterized by crowded living conditions. As a result, Household Conversations were not as private as desired. Cultural norms sometimes hindered openness among family members, particularly when discussing sensitive topics. For instance, discussions on domestic violence, income generation, or sexuality were often less informative when conducted in the presence of the household head (usually the male).
Furthermore, gender dynamics influenced the research process. Most study participants were women (n = 610, 73·05%), and participants, including men, hesitated to discuss certain topics in the presence of their spouses. Gender norms appeared to limit freedom of expression within households. Some participants were more candid after the official interview had concluded and the recorder was turned off, and the RA and usually female participant were no longer within earshot. Notably, gender-based challenges arose due to situational constraints in the research setting. For instance, when a male RA interviewed a female respondent in a private setting, it sometimes resulted in harassment and potential violence toward the RA. Conversely, some respondents preferred to be interviewed by a specific gender due to perceived power imbalances. This situation sometimes led to challenges in data collection.
To address these issues, RAs received training to apply various techniques (observation, field notes, debriefs, and follow-ups) alongside the primary data collection approach, the HC. Additionally, the research team comprised both male and female RAs to conduct HCs, helping to mitigate gender-based biases and provide support in handling security concerns. Both male and female RAs reported perceived verbal threats, sometimes of a sexual nature, and having a partner of the opposite sex helped manage these situations.
Operational Costs and Budgetary (Cost of Research) Challenges:
The health challenges and other unforeseen developments substantially escalated operational costs. Collectively, these factors, including unanticipated field costs and budgetary shortfalls, impacted the study timeline and led to a 50% increase in operational costs. We brought in five volunteers to support the team, but this only partially mitigated the challenges. The blended training approach, combining face-to-face and online training, extended the training period by three weeks, 60% longer than planned, to sufficiently prepare RAs for work during the evolving pandemic. The cost of personal protective equipment (PPE) surged by up to 20% from budgeting to procurement. Identifying willing and consenting participants proved slower due to public suspicion, particularly in the months leading up to national presidential elections. Interviews took longer as participants sought to express their views to government leaders, often deviating from the main discussion points. Local guides from the communities, who possessed extensive knowledge of their environments, raised their labor costs by up to 50%, as they had no other source of daily income during lockdown. Finding suitable interview spaces became challenging due to the need for social distancing, privacy, and confidentiality in crowded, low-cost environments, with all family members present at home due to lockdown. Fuel costs rose by 30% due to a higher number of trips than initially planned. The extended data collection period by 20% necessitated hiring the team for an additional four weeks, resulting in a 30% increase in personnel costs.
Conducting research during the pandemic exposed new and unforeseen costs that were not initially anticipated and budget adjustments proved very challenging. The support of welfare and protection of team members, particularly those infected with SARS-CoV-2 during the study, involved significant expenses. The original budget did not account for the cost of COVID tests, which amounted to USD 30 per test. Additionally, the infected team members required prolonged management, including counseling which had not been budgeted for. In addition, the study could only cover immediate care expenses, constituting approximately 10% of the total required for complete care during the study period. Some team members who contracted SARS-CoV-2 faced stigma and required psychosocial support, which had not been fully anticipated or adequately costed.
Furthermore, there were costs related to time lost when potential study participants exhibited COVID symptoms or reported having the virus. Teams had to skip these households, which prolonged the time needed to reach the target sample size, impacting the study's overall cost.
The prolonged full lockdown provided opportunity for prolonged training prior to the start of field work to ensure the RAs were very well trained. The slow ethical approval process further delayed the start of data collection.
When a partial lockdown allowed some fieldwork, regular COVID testing became necessary during ongoing community viral transmission. The increased testing, coupled with restrictions on vehicle occupancy and curfews, raised transportation costs. Communication costs also escalated to facilitate virtual team meetings and daily debriefs. All these required data plans, phone calls, and in some cases, tablets and smartphones for team members without laptops. Finally, costs associated with covering tasks for researchers placed in isolation, including hiring new RAs while keeping the infected ones on pay, further strained the budget. Overtime pay was not feasible due to budget constraints.
Difficulty to implement CE as part of the pandemic response posed a significant challenge. The tension between the national government's desire to rapidly execute public health measures during a pandemic and the initial slow approach to mobilize and engage communities for a more effective long-term response created complications. When communities did not fully comprehend the severity of the health threat and did not embrace the proposed interventions, it resulted in community resistance and some rejection of the recommended actions.
Certain segments of society welcomed the presence of our Makerere University research team, as we provided crucial information about the pandemic. This reaffirmed the value of CERC in preparing and supporting communities to prepare them and respond to their needs and challenges in contextually appropriate ways. However, both the government and the research team faced high community expectations during the pandemic. Taking the necessary time to provide needed explanations and engage with the community slowed down the study progress and increased costs due to extended field work.