COVID-19 may exacerbate the clinical, structural and psychological barriers to retention in care among women living with HIV in rural and peri-urban settings in Uganda

  • BMC Infectious Diseases, Volume 21, No. 1, Year 2021

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Study Justification:
– The study aimed to address the low retention of pregnant and breastfeeding women and their infants in HIV care in Uganda.
– It sought to understand the barriers and facilitators for reengagement in care among previously traced women on option B+ and how these may have been impacted by the COVID-19 pandemic.
Study Highlights:
– The study found that women faced various barriers to reengagement and retention in care during the COVID-19 pandemic, including transport difficulties, financial constraints, unsupportive healthcare workers, short supply of drugs, clinic delays, lack of privacy, medicine side effects, perceived or experienced stigma, and non-disclosure of HIV sero-status.
– Supportive structures such as family, community-based medicine distribution models, and a friendly healthcare environment were identified as key facilitators to retention in care.
– The COVID-19 pandemic was reported to exacerbate the barriers to retention in care.
Study Recommendations:
– The study recommends the implementation of community-based models such as drop-out centers, peer-facilitated distribution, and community outreaches as alternative measures for access to antiretroviral therapy (ART) during the COVID-19 pandemic.
Key Role Players:
– Researchers and research team
– Healthcare providers and facilities
– Community health workers
– Policy makers and government officials
– Non-governmental organizations (NGOs) and community-based organizations (CBOs)
Cost Items for Planning Recommendations:
– Training and capacity building for healthcare providers and community health workers
– Development and implementation of community-based models
– Outreach activities and transportation costs
– Medication and supply procurement
– Monitoring and evaluation activities
– Communication and awareness campaigns

The strength of evidence for this abstract is 7 out of 10.
The evidence in the abstract is moderately strong. The study design is clearly described as a qualitative study nested within a larger prospective cohort study. The methods used for data collection and analysis are also clearly outlined. However, the sample size is relatively small, with only 17 participants, which may limit the generalizability of the findings. To improve the strength of the evidence, it would be beneficial to increase the sample size and include participants from a wider range of healthcare facilities. Additionally, conducting face-to-face interviews instead of telephone calls would allow for more in-depth data collection. Finally, providing more details on the demographic characteristics of the participants, such as age and socioeconomic status, would enhance the understanding of the study population.

Background: Retention of pregnant and breastfeeding women and their infants in HIV care still remains low in Uganda. Recent literature has shown that the effects of COVID-19 mitigation measures may increase disease burden of common illnesses including HIV, Tuberculosis, Malaria and other key public health outcomes such as maternal mortality. A research program was undertaken to locate disengaged HIV positive women on option B+ and supported them to reengage in care. A 1 year follow up done following the tracing revealed that some women still disengaged from care. We aimed to establish the barriers to and facilitators for reengagement in care among previously traced women on option B+, and how these could have been impacted by the COVID-19 pandemic. Methods: This was a cross sectional qualitative study using individual interviews conducted in June and July, 2020, a period when the COVID-19 response measures such as lockdown and restrictions on transport were being observed in Uganda. Study participants were drawn from nine peri-urban and rural public healthcare facilities. Purposive sampling was used to select women still engaged in and those who disengaged from care approximately after 1 year since they were last contacted. Seventeen participants were included. Data was analysed using the content analysis approach. Results: Women reported various barriers that affected their reengagement and retention in care during the COVID-19 pandemic. These included structural barriers such as transport difficulties and financial constraints; clinical barriers which included unsupportive healthcare workers, short supply of drugs, clinic delays, lack of privacy and medicine side effects; and psychosocial barriers such as perceived or experienced stigma and non-disclosure of HIV sero-status. Supportive structures such as family, community-based medicine distribution models, and a friendly healthcare environment were key facilitators to retention in care among this group. The COVID-19 pandemic was reported to exacerbate the barriers to retention in care. Conclusions: COVID-19 may exacerbate barriers to retention in HIV care among those who have experienced previous disengagement. We recommend community-based models such as drop out centres, peer facilitated distribution and community outreaches as alternative measures for access to ART during the COVID-19 pandemic.

This was a qualitative study, nested in a larger prospective cohort (community tracing) study (LOCATOR) of women who initiated ART for Life during pregnancy as part of the WHO recommended option B+ strategy for prevention of mother to child transmission of HIV [19]. Data were collected from 17 women using in-depth individual interviews, in June and July 2020. The LOCATOR study was conducted in nine public health facilities in Kampala and Wakiso districts in Uganda. The HIV clinics at the facilities were supported by the Infectious Diseases Institute (IDI) as the HIV/AIDS program implementing partner for the Uganda Centers for Disease Control-President’s Emergency Plan for AIDS Relief (CDC-PEPFAR). The study used existing routinely collected data from to identify women initiated in ART retained on care or those who had disengaged from care, based on the information on their clinic encounters. A total of 116 disengaged and 557 retained women were enrolled in the LOCATOR study. The sample included women who initiated antiretroviral therapy, disengaged from HIV care and later traced and reengaged back in care. After one year from the initial community tracing, the disengaged women were interviewed and asked whether they had re-engaged in care or were still disengaged (lost from HIV care). The 1-year follow-up assessment which occurred from April 2020 to July 2020 coincided with the COVID-19 epidemic and the first national lockdown period in Uganda. For this nested qualitative study, a total of 17 women were interviewed to ascertain the impact of the COVID-19 epidemic and associated mitigation measures on existing barriers and facilitators to retention in care. Both purposive and convenience sampling approaches were utilized to select potential study participants. We aimed to include a maximum of 20 women, with 10 reengaged and 10 disengaged women from the six healthcare facilities. We also aimed to include women in the younger (18–24 years) and older age (25 years and above) brackets. However, three of those contacted (two disengaged and one engaged) did not agree to participate in the in-depth qualitative interviews, hence our sample size included 17 women, with nine engaged in and eight disengaged from care. Due to COVID-19 response measures that restricted movement, we conducted telephone calls to the participants instead of face to face interviews. This was mainly due to the ongoing restrictions that prohibited the research team from physically meeting the respondents. In-depth individual interviews were conducted using a semi-structured interview guide developed for this study (Additional file 1). Following consent, interviews were recorded using a digital voice recorder. Data collection was conducted in June and July 2020 by two experienced qualitative researchers (main interviewer and assistant). Recorded interviews were transcribed verbatim and where necessary directly translated before analysis. Data was analysed using the content analysis approach, in which codes, categories and themes were generated. The analysis also drew on the principles of Grounded theory (e.g. constant comparison, theoretical sampling and saturation, and memo writing). Data analysis was done inductively, where codes were generated from the data. A word template was initially used to code the data and following generation of initial codes and tentative categories, data analysis was transferred to NVivo 12 software for further analytical processes, including final categorisation and generation of themes and sub-themes. Attention to rigor was achieved through on-going discussion within the research team regarding each step of the research process. Verbatim quotes were also used to support our interpretations of the data.

The recommendation to improve access to maternal health based on the study is to implement community-based models such as drop-out centers, peer-facilitated distribution, and community outreaches as alternative measures for access to antiretroviral therapy (ART) during the COVID-19 pandemic. These models can help address the barriers identified in the study, including transport difficulties, financial constraints, unsupportive healthcare workers, short supply of drugs, clinic delays, lack of privacy, medicine side effects, perceived or experienced stigma, and non-disclosure of HIV sero-status. By bringing ART services closer to the community and involving peers in the distribution and support process, pregnant and breastfeeding women living with HIV can have improved access to care and better retention in HIV care. This recommendation is based on the findings of the qualitative study conducted in Uganda, which highlighted the impact of the COVID-19 pandemic on barriers to retention in care among women living with HIV. The study was published in BMC Infectious Diseases in 2021.
AI Innovations Description
The recommendation to improve access to maternal health based on the study is to implement community-based models such as drop-out centers, peer-facilitated distribution, and community outreaches as alternative measures for access to antiretroviral therapy (ART) during the COVID-19 pandemic. These models can help address the barriers identified in the study, including transport difficulties, financial constraints, unsupportive healthcare workers, short supply of drugs, clinic delays, lack of privacy, medicine side effects, perceived or experienced stigma, and non-disclosure of HIV sero-status. By bringing ART services closer to the community and involving peers in the distribution and support process, pregnant and breastfeeding women living with HIV can have improved access to care and better retention in HIV care. This recommendation is based on the findings of the qualitative study conducted in Uganda, which highlighted the impact of the COVID-19 pandemic on barriers to retention in care among women living with HIV. The study was published in BMC Infectious Diseases in 2021.
AI Innovations Methodology
To simulate the impact of the main recommendations on improving access to maternal health, a potential methodology could involve the following steps:

1. Selection of study sites: Identify rural and peri-urban areas in Uganda where access to maternal health services is limited or affected by barriers similar to those identified in the qualitative study.

2. Intervention implementation: Implement the community-based models recommended in the study, including drop-out centers, peer-facilitated distribution, and community outreaches. These interventions should aim to bring antiretroviral therapy (ART) services closer to the community and involve peers in the distribution and support process.

3. Data collection: Collect data on the implementation of the interventions, including the number of drop-out centers established, the frequency and reach of community outreaches, and the involvement of peer facilitators in ART distribution and support.

4. Quantitative assessment: Conduct quantitative assessments to measure the impact of the interventions on access to maternal health. This could involve tracking the number of pregnant and breastfeeding women living with HIV who are able to access ART through the community-based models compared to the previous standard of care. Additionally, assess the retention rates in HIV care among these women to determine if the interventions have improved retention.

5. Qualitative assessment: Conduct qualitative assessments, such as interviews or focus group discussions, with the women who have accessed maternal health services through the community-based models. Explore their experiences, challenges, and perceptions of the interventions to gain a deeper understanding of their impact.

6. Data analysis: Analyze the quantitative and qualitative data collected to evaluate the impact of the interventions on improving access to maternal health. This analysis should focus on key indicators such as the number of women accessing ART, retention rates in HIV care, and the experiences and perceptions of the women who have utilized the community-based models.

7. Comparison with control group: If feasible, compare the outcomes of the intervention group (women accessing maternal health services through the community-based models) with a control group (women receiving standard care) to assess the effectiveness of the interventions.

8. Reporting and dissemination: Compile the findings of the simulation study and prepare a report highlighting the impact of the community-based models on improving access to maternal health. Disseminate the findings to relevant stakeholders, including policymakers, healthcare providers, and community organizations, to inform decision-making and potential scale-up of the interventions.

It is important to note that this methodology is a hypothetical approach to simulate the impact of the recommendations based on the information provided in the abstract. The actual implementation and evaluation of such interventions would require careful planning, ethical considerations, and collaboration with relevant stakeholders.


Statistics:
Citations: 4
Identifiers:
DOI: 10.1186/s12879-021-06684-6
Research Areas:
Community Interventions, COVID, Health System and Policy, Infectious Diseases, Maternal Access, Maternal and Child Health, Quality of Care, Sexual and Reproductive Health, Social Determinants
Study Countries:
Uganda
Study Design:
Cohort Study, Cross Sectional Study, Grounded Theory
Study Approach:
Qualitative
Participants Gender:
Female
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