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"rural women living with HIV"
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“Correcting Misinformation is Challenging”: Exploring Barriers and Facilitators of Health Care Providers’ Responsiveness to Cervical Cancer Screening Literacy Needs of Rural Women Living With HIV in Eastern Uganda
by
Nakanjako, Damalie
,
Makumbi, Fredrick
,
Namutundu, Juliana
in
Adult
,
Communication
,
Early Detection of Cancer - psychology
2026
IntroductionCervical cancer screening literacy among rural women living with HIV (WLHIV), the ability to access, understand, appraise, and apply cervical cancer screening information to use cervical cancer screening services, is affected by individual factors including low educational attainment, low socioeconomic status, poor cervical cancer risk perception, fear, misconceptions, and beliefs, as well as interpersonal, community, and health facility barriers. However, rural public health facilities have limited resources that limit their ability mitigate these challenges. This research identified barriers and facilitators of healthcare providers' responsiveness to cervical cancer screening literacy needs of rural WLHIV in Eastern Uganda.MethodsThis was a descriptive qualitative study that involved conducting 15 Key Informant Interviews with all individuals involved in planning, communicating, and providing cervical cancer screening services at 4 purposively selected rural public health facilities in Eastern Uganda. Data were collected using a guide developed based on the organizational Health Literacy responsiveness framework. This framework was used to derive deductive categories (domains and sub-domains) during thematic analysis, and barriers and facilitators were inductively identified from the interviews.ResultsBarriers included non-involvement of health workers and affected women in planning, limited funding, few trained health workers, long waiting times, limited space, limited communication modalities, inadequate Information Education and Communication (IEC) materials, IEC materials not translated to the local language, challenges with addressing misconceptions, and language barriers. Facilitators included support from implementing partners, free cervical cancer screening services, integration of cervical cancer screening into HIV care, consumer-centered care, clear pathways and navigation support, using peers during health education, availability of IEC materials, using simple, local language during education sessions, and health worker facilitation.ConclusionStrategies targeted at the identified factors can improve health care providers' responsiveness to the cervical cancer screening literacy needs of rural WLHIV in Eastern Uganda.
Journal Article
Integrating the behavior change wheel and co-design approach in selecting strategies for improving cervical cancer screening literacy among rural women living with HIV in Eastern Uganda
by
Nangendo, Joan
,
Semeere, Aggrey
,
Namutundu, Juliana
in
Adult
,
Behavior Change Wheel
,
Cervical cancer
2026
Background
Women living with HIV (WLHIV) require more frequent cervical cancer screening than HIV negative women. However, uptake of cervical cancer screening services integrated into HIV care at most rural public health facilities in Eastern Uganda is low, below 50%. This is attributed to low cervical cancer screening literacy among rural WLHIV: limited ability to access, understand, and apply cervical cancer screening information. There is a need for evidence-based, context-specific, theory-informed strategies that target multi-level barriers and facilitators of cervical cancer literacy among these women. This study used research evidence, theory, and stakeholder engagement in selecting strategies for improving cervical cancer screening literacy among rural WLHIV.
Methods
This qualitative study applied research evidence to the Behavior Change Wheel (BCW) and co-design approach. The eight steps of the BCW included: 1) defining the problem in behavioral terms, 2) selecting the target behavior, 3) specifying the target behavior, 4) identifying what needs to change, 5) identifying intervention functions, 6) identifying policy categories, 7) identifying Behavior Change Techniques (BCT), and 8) identifying the mode of delivery. We conducted four parallel co-design sessions with 12 health care providers and 16 rural women at steps 3 and 4 of the BCW.
Results
We formulated eighteen behavioral targets that were linked to all Capability, Opportunity, and Motivation-Behavior (COM-B) behavioral determinants. Nine behavioral targets were selected under the education, persuasion, enablement, and training intervention functions, as well as the communication/marketing and service provision policy categories. We identified ten most appropriate BCTs and four modes of delivery, which translated into four strategies, namely: 1) trained cervical cancer screening peer educators, 2) cervical cancer screening education video, 3) improved cervical cancer screening IEC charts, and 4) train midwives to prepare small portions of acetic acid for individual patient screening.
Conclusions
The BCW provided a comprehensive framework that integrated a co-design approach and applied research evidence in selecting context-specific and feasible strategies for improving cervical cancer screening literacy among rural WLHIV. Future research is needed to design and evaluate these strategies.
Journal Article
User-Centered Design of Strategies for Improving Cervical Cancer Screening Literacy Among Rural Women Living with HIV in Eastern Uganda
by
Ejalu, David
,
Wanyenze, Rhoda
,
Namutundu, Juliana
in
Cancer
,
Care and treatment
,
Cervical cancer
2026
The uptake of cervical cancer screening services among rural Women Living with HIV (WLHIV) attending several rural public facilities in Eastern Uganda is low at less than 50% of the target. This gap is largely influenced by low screening literacy among these women, difficulties in accessing, understanding and applying cervical cancer screening information due to multiple barriers, including limited education, low socioeconomic status, misconceptions, and fear. Therefore, context-specific and culturally appropriate strategies are needed to overcome these barriers. This study engaged rural WLHIV in Eastern Uganda to co-design three strategies to improve their cervical cancer screening literacy.
This participatory research combined the User-Centered Design (UCD) approach with co-design workshops to design the three strategies. Participants included 16 rural WLHIV from four rural public health facilities in Mayuge and Namayingo districts who had participated in prior studies that identified and selected these strategies. This process involved the ideation and implementation phases of the UCD approach. It was led by a medical illustrator and a Sexual and a Behavioral Change Communication specialist, supported by two healthcare providers.
Two IEC charts, one on the importance of cervical cancer screening and the other addressing key misconceptions regarding cervical cancer screening. Both IEC charts had colorful pictures, and few texts in local language, Luganda, explaining the pictures. Two peer educators were trained to provide cervical cancer screening education, address misconceptions about cervical cancer screening, and encourage women to undergo cervical cancer screening. A ten-minute cervical cancer screening education video was designed, comprising a midwife providing cervical cancer screening education and a trained peer educator interacting with a client.
Integrating co-design and UCD approaches facilitated the design of context-specific strategies that incorporated preferences for rural WLHIV and targeted barriers to cervical cancer-screening literacy among these women.
Journal Article
HIV testing and linkage to ART following secondary distribution of HIV self‐test kits to male partners of women living with HIV: a pilot randomized control trial in Mpumalanga, South Africa
by
Joseph Davey, Dvora L.
,
Naidoo, Nireshni
,
Dovel, Kathryn
in
Acquired immune deficiency syndrome
,
Adult
,
AIDS
2022
Introduction South African men are underrepresented in HIV testing and treatment services. Secondary distribution of oral HIV self‐test (HIVST) kits by women living with HIV (WLHIV) to their male partners (i.e. index partner HIVST) may increase men's testing and treatment but has been understudied. Methods Between March and July 2021, we evaluated the effectiveness of index partner HIVST versus the standard of care (SOC) (invitations for men's facility‐based testing) on men's testing in a 1:1 randomized control trial. Eligibility criteria included: WLHIV; ≥18 years of age; attending one of four high‐density rural clinics; have a working cell phone; and self‐reported having a primary male partner of unknown serostatus. The primary outcome was the proportion of WLHIV reporting that her partner tested for HIV within 3 months after enrolment. Results We enrolled 180 WLHIV and 176 completed an endline survey (mean age = 35 years, 15% pregnant, 47% unmarried or non‐cohabiting). In the HIVST arm, 78% of male partners were reported to have tested for HIV versus 55% in SOC (RR = 1.41; 95% CI = 1.14–1.76). In the HIVST arm, nine men were reactive with HIVST (14% positivity), six were confirmed HIV positive with standard testing (67%) and all of those started antiretroviral therapy (ART), and four HIV‐negative men started pre‐exposure prophylaxis (PrEP) (5%). In SOC, six men were diagnosed with HIV (12% positivity), 100% started ART and seven HIV‐negative men started PrEP (16%). One case of verbal intimate partner violence was reported in the HIVST arm. Conclusions Secondary distribution of HIVST to partners of WLHIV was acceptable and effective for improving HIV testing among men in rural South Africa in our pilot study. Interventions are needed to link reactive HIVST users to confirmatory testing and ART.
Journal Article
HIV self-testing and HIV nondisclosure to male sexual partners among adolescent girls and young women living with HIV in semi-rural northern Uganda: a cross-sectional study
2025
Background
The burden of HIV remains disproportionally high among the adolescent girls and young women. This is often coupled with nondisclosure of HIV status partly due to delayed knowledge of HIV status which affects entry into HIV prevention interventions. HIV self-testing which provides instant knowledge of HIV status is being promoted to enable early disclosure. However, previous studies about the association between HIV self-testing (HIVST) and HIV disclosure are scarce. We, therefore, set out to determine the prevalence of HIVST, nondisclosure of HIV status to male partners, and the predictors among adolescent girls and young women living with HIV (AGYWLHIV) in Uganda.
Methods
In a cross-sectional study design, a stratified random sample of AGYWLHIV were recruited from ART clinics in semi-rural northern Uganda between November 2022 and April 2023. The participants received an interviewer-administered questionnaire. HIV self-testing was defined as the use of the HIVST method by the AGYWLHIV to discover their HIV status. Similarly, HIV nondisclosure was defined as the AGYWLHIV’s failure to disclose her initial HIV status to her current male sexual partner before their first sexual intercourse regardless of the use of condoms.
Results
A total of 423 participants with a mean age of 21.6 ± 2.5 years participated in the study. The study found that only 3.8% of the AGYWLHIV discovered their HIV status through HIVST. Furthermore, 26.7% of the AGYWLHIV did not disclose their status to their current male partners, 35.5% experienced non-disclosure from their current male partners, and 16.5% experienced bidirectional non-disclosure. The predictors for non-disclosure of initial HIV status were found to include the AGYWLHIV’s knowledge of their initial negative HIV status [APR 0.3 (0.2–0.5), p 0.001], the AGYWLHIV’s knowledge of their initial positive HIV status [APR 0.5 (0.3–0.7), p 0.002], the AGYWLHIV’s prior knowledge of the positive initial HIV status of the male partner [APR 0.4 (0.2–0.8), p 0.010] and the male partner’s nondisclosure of their initial HIV status to the AGYWLHIV [APR 2.0 (1.2–3.5), p 0.008].
Conclusions
The prevalence of HIVST and HIV nondisclosure to male sexual partners among the AGYWLHIV in semi-rural Uganda stood at 38 in 1000 and 267 in 1000 respectively. The HIVST wasn’t associated with HIV nondisclosure but the women’s initial negative or positive HIV status, the male partner’s initial positive HIV status and the male partners’ nondisclosure of their initial HIV status to the AGYWLHIV were found to be independent predictors. These findings point to the need for health workers to target the distribution of HIVST kits at the AGYWLHIV attending ART clinics to give them to men in their sexual and social networks to expand access to HIV testing, improve chances of two-way HIV disclosure and entry into the HIV prevention, treatment, and care services.
Journal Article
Community-based family planning resources and modern contraceptive use among young women living with HIV in semi-rural northern Uganda: a mixed-method study
by
Kabiri, Lydia
,
Kumakech, Edward
,
Doryn, Ebong
in
Adolescent
,
Adolescents and young women living with HIV
,
Antiretroviral agents
2026
Background
Adolescent girls and young women living with HIV (AGYWLHIV) face heightened risks of unintended pregnancy and often encounter barriers to accessing appropriate family planning (FP) services, particularly in Uganda. Village Health Teams (VHTs) are expected to promote the uptake of modern contraceptives (MCs), yet limited evidence exists regarding their effectiveness among AGYWLHIV in semi-rural areas. This study aimed to determine the prevalence, associated factors, and predictors of MC use among AGYWLHIV accessing HIV care in semi-rural northern Uganda, with a focus on the role of VHTs and other individual, sociocultural, and structural influences.
Methods
A convergent mixed-methods study was conducted in Lira district and city northern Uganda among a stratified sample of AGYWLHIV aged 15–24 accessing antiretroviral therapy (ART) at public health facilities. Quantitative data were collected using interviewer-administered questionnaires while qualitative data were gathered through individual in-depth interviews with a purposively selected subsample reporting non-use of MCs. Participants were asked about their awareness and use of FP services, current MC use, and reasons for non-use. Statistical analysis involved descriptive statistics and multivariable modified Poisson regression at a 5% significance level. Manual thematic analysis was used for qualitative data and integration was performed at interpretation to provide a comprehensive understanding.
Results
We recruited 423 AGYWLHIV aged 21.6 ± 2.5. The study found 62.4% (95% CI 57.8–67.0) MC use prevalence. The MC use was significantly associated with the woman being a catholic by religion (
p
= 0.001, APR 1.262 (95% CI 1.096–1.452), having no fertility desires (
p
= 0.034, APR 0.728, 95% CI 0.543–0.976), being single (
P
< 0.001, APR 0.751, 95% CI 0.651–0.866), alcohol use (
p
= 0.001, APR 1.288 (95% CI 1.117–1.485), being pregnant (
p
= 0.004, APR 0.306, 95% CI 0.137–0.684) and having an HIV negative male partner (
p
= 0.009, APR 1.225, 95% CI 1.052–1.425). Qualitative findings highlighted barriers including male partner disapproval, stigma, misinformation, pregnancy or postpartum status and sociocultural norms.
Conclusion
While MC use prevalence among AGYWLHIV in semi-rural northern Uganda exceeds national, East African and SSA averages, uptake is influenced by multifaceted socio-cultural, individual and systemic factors. The lack of significant associations between the women’s awareness of the various community-based FP resources or providers and their use of MCs but religious affiliation, marital status, alcohol use, fertility desires and male partner’s HIV status implies that socio-cultural, individual and systemic barriers to MC use should be addressed alongside awareness creation to improve the MC use in the AGYWLHIV population.
Journal Article
I have no peace of mind—psychosocial distress expressed by rural women living with HIV in India as part of a mobile health intervention—a qualitative study
by
Jeon, Sangchoon
,
Chandra, Prabha S
,
Parameshwaran, Soumya
in
Activities of daily living
,
Body image
,
Children
2018
This qualitative study assessed psychosocial concerns that rural women with HIV who had multiple psychosocial vulnerabilities were able to express and communicate during a mobile phone intervention delivered by nurses. The study is part of a pilot randomised controlled trial of an mHealth self-care intervention by nurses for women living with HIV in rural India. For the trial, 60 women were randomised to receive the mHealth intervention. All calls were recorded and call logs were maintained. Call logs of 59 women based on 1186 calls were scanned for psychosocial themes. Audio recordings of 400 calls rich in content were then transcribed and translated for analysis. Themes and subthemes were identified by two independent raters. Majority of the women had low literacy and more than half were widowed. Clinical depression was found in 18.6%. Of the 1186 call logs analysed, 932 calls had a record of at least one psychosocial concern and 493 calls recorded two psychosocial concerns. Some of the major themes that women discussed with nurses included worries about their own and their children’s future; loneliness; stigma; inadvertent disclosure; death and dying; abandonment by partner; financial difficulties; body image; poor social support; emotions such as sadness, guilt, and anger; and need for social services. Almost all expressed appreciation for the intervention. Findings indicate the usefulness of mHealth-based self-care interventions delivered by nurses in hard to reach women in low- and middle-income countries, especially those with multiple psychosocial vulnerabilities.
Journal Article
Feasibility and Acceptability of Real-Time Antiretroviral Adherence Monitoring among Depressed Women Living with HIV in the Deep South of the US
by
Azuero, Andres
,
Jagielski, Christina H
,
Haberer, Jessica E
in
Acceptability
,
Acquired immune deficiency syndrome
,
Adherence
2019
This study presents feasibility and acceptability data on the use of a real-time wireless electronic adherence monitor (EAM), among African American women living with HIV with co-occurring depression, residing in remote areas of the Southeastern United States. EAM and self-report ART adherence was monitored over an average of 14.8 weeks among 25 participants who were recruited at four HIV clinics in Alabama. Intra-class correlation showed a low degree of concordance between EAM and self-report (ICC = 0.33, 95% bootstrap CI 0.13, 0.59). 83% of data collected via EAM was transmitted in real-time. Due to technological failures, 11.4% were not transmitted in real-time, but were later recovered, and 5.7% were lost entirely. Acceptability was examined through surveys and qualitative interviews. Results suggest that EAM monitoring is acceptable and feasible in a rural US setting; however, technological difficulties, such as loss of connectivity may impede the device’s usefulness for just-in-time adherence interventions.
Journal Article
Lifetime prevalence and adherence rate of cervical cancer screening among women living with HIV: a systematic review and meta‐analysis
by
Sun, Jingyi
,
Rudan, Igor
,
Gao, Xiangrong
in
Acquired immune deficiency syndrome
,
adherence
,
AIDS
2023
Introduction Women living with HIV (WLWH) are more likely to develop cervical cancer. Screening and available healthcare can effectively reduce its incidence and mortality rates. We aimed to summarize the lifetime prevalence and adherence rate of cervical cancer screening among WLWH across low‐ and middle‐income countries (LMICs), and high‐income countries (HICs). Methods We systematically searched PubMed, Web of Science and Embase for studies published between database inception and 2 September 2022, without language or geographical restrictions. Those reporting the lifetime prevalence and/or adherence rate of cervical cancer screening among WLWH were included. Pooled estimates across LMICs and HICs were obtained using DerSimonian–Laird random‐effects models. When the number of eligible studies was greater than 10, we further conducted stratified analyses by the World Health Organization (WHO) region, setting (rural vs. urban), investigation year, screening method, type of cervical cancer screening programme, age and education level. Results Among the 63 included articles, 26 provided data on lifetime prevalence, 24 on adherence rate and 13 on both. The pooled lifetime prevalence in LMICs was 30.2% (95% confidence interval [CI]: 21.0–41.3), compared to 92.4% in HICs (95% CI: 89.6–94.6). The pooled adherence rate was 20.1% in LMICs (95% CI: 16.4–24.3) and 59.5% in HICs (95% CI: 51.2–67.2). Discussion There was a large gap in cervical cancer screening among WLWH between LMICs and HICs. Further analysis found that those in LMICs had higher lifetime prevalence in subgroups with urban settings, with older age and with higher education levels; and those in HICs had higher adherence in subgroups with younger age and with higher education levels. Conclusions Cervical cancer screening among WLWH falls considerably short of the WHO's goal. There should be continuous efforts to further increase screening among these women, especially those residing in the rural areas of LMICs and with lower education levels.
Journal Article
Identifying gaps in women’s preventive health services for women living with HIV in Vermont
by
Balasubramanian, Anupama
,
He, Yu Ting
,
Hahn, Elizabeth
in
Acquired immune deficiency syndrome
,
Adult
,
AIDS
2025
Background
Women living with HIV (WLHIV) in the United States experience higher rates of death from cervical and breast cancer and lower screening rates for both compared to women without HIV. These disparities highlight the need to better understand access to and uptake of women’s preventive health services—particularly cervical cancer screening, breast cancer screening, and HPV vaccination. Most existing data on these services among WLHIV come from urban settings; therefore, the purpose of this study was to investigate factors affecting adherence to these preventive health measures among WLHIV in Vermont, a rural state with unique healthcare challenges.
Methods
This cross-sectional study included a retrospective analysis of electronic medical record (EMR) data and a one-time quantitative survey. The EMR analysis assessed cervical Papanicolaou (Pap) smear, mammography, and human papillomavirus (HPV) vaccination rates among WLHIV and women without HIV enrolled in care at University of Vermont-affiliated sites from January 2017 to December 2020. The survey collected demographic information and details regarding care received from WLHIV.
Results
Among 98 WLHIV and 481 women without HIV, WLHIV were significantly less likely to receive appropriate Pap smears (56.1% vs. 74.2%,
p
< 0.001), mammographies (57.1% vs. 88.4%,
p
< 0.001), and at least one dose of the HPV vaccine (7.1% vs. 20.0%,
p
= 0.002). Survey data from 41 WLHIV revealed that being sexually active, heterosexual, in a relationship, premenopausal, and housing secure were associated with higher Pap smear adherence.
Conclusions
These findings underscore the importance of addressing both individual and systemic factors to improve the provision and receipt of women’s preventive health services WLHIV, especially in rural healthcare settings.
Plain English Summary
Women living with HIV in the U.S. are more likely to die from cervical and breast cancer than women without HIV. Unfortunately, they are also less likely to receive preventive care with respect to these cancers, with lower rates of breast and cervical cancer screening and lower rates of HPV vaccination to prevent the development of cervical cancer. Most research on this issue has focused on cities; therefore, this study examined screening rates and factors influencing them in Vermont, a rural state with unique healthcare challenges.
Researchers analyzed medical records corresponding to clinic visits from 2017 to 2020 and surveyed women with HIV about their health and screening habits. They found that women with HIV were significantly less likely to receive routine cervical cancer tests (Pap smears), breast cancer screenings (mammograms), or the HPV vaccine compared to women without HIV. Only about 56% of women with HIV had up-to-date Pap smears, compared to 74% of women without HIV. Mammogram rates were also much lower (57% vs. 88%), and HPV vaccination was rare in both groups, but even lower among women with HIV.
The survey showed that women with HIV who were sexually active, in relationships, premenopausal, or had stable housing were more likely to stay on track with cervical cancer screening.
This study highlights the need for better support systems to ensure women with HIV, especially in rural areas, get the cancer screening and other preventative measures they need. Addressing barriers at both the personal and healthcare system levels could help improve these rates and ultimately save lives.
Journal Article