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Community perspectives and insights into cancer surveillance, prevention, and research: an engaged participatory approach to cancer epidemiology research in remote areas of Northeastern Uganda
(Springer Nature, 2026-04-24) Ronald Opito; Alfred Jatho; Wilber Sabiiti; Hellen Akurut; Emmanuel Othieno; Lawrence Obado Osuwat; Anthony Mugeere; Patrick Igulot; Jackson Orem
Background There is limited research on cancer screening, prevention and treatment in the remote areas of
Northeastern Uganda. Specifically, there is limited research presenting cancer control stakeholder perspectives in
remote settings, whereas stakeholders’ perspectives are critical for an engaged participatory approach to cancer
control. This study therefore aimed to establish the community (patients, caretakers, opinion leaders, health managers
and policy makers) perspectives on cancer surveillance, prevention, treatment and identify priorities for cancer
research in Northeastern Uganda.
Methods This qualitative research was part of a stakeholder’s consultation on cancer research priorities in Northeastern
Uganda for Wellcome Trust research grant application, conducted by a consortium of research partners. Six semi
structured Key Informant Interviews (KIIs), two focus group discussions (FGDs) and one community dialogue meeting
were conducted between July and August 2025. Thematic data analysis was conducted to identify emergent themes from
the interviews. Findings are presented using the key emergent themes, supporting quotes, and are presented in tables
and text. This study is reported in accordance with Consolidated Criteria for Reporting Qualitative Research (COREQ).
Key Findings There was delayed diagnosis in most cases for cancer patients. After the cancer diagnosis, patients
were referred to Mulago Hospital, approximately 300Km away from their homes for further treatment, with many
hesitations and incapacity to go to Mulago due to many social and economic challenges. There is no stand-alone
cancer surveillance system in the country and currently it depends on health facility data which have lots of
weaknesses including incompleteness and inaccuracy. Health facilities are ill-prepared to respond to the growing
burden of cancers. Priorities for cancer research include epidemiology and etiology of cancer and a focus on
population-based registry for unique populations in Uganda and strengthening cancer surveillance systems.
Conclusion This study highlights the importance of an engaged approach based on Participatory Action Research
theory to identify problems. Through this approach, the research team was able to accurately understand the
research context, identify research issues, and priorities. Priorities for cancer research identified by this study include
epidemiology and etiology of cancer, including the incidence studies and geographical mapping of these cancers,
conducting cancer disease surveillance at the landing site and investigating the contribution of the locally available
foods and environment to cancers.
There is need for community sensitization and screening for cancers in the entire region. Involvement of
community team leaders such as village health teams (VHTs), local council I (LCIs), traditional and church leaders
in cancer surveillance should be encouraged and the community case definitions of common cancers should be
refined and the capacity of the community workers (VHTs) built to detect cancers at community level.
Through this preliminary research, the groundwork for science anchored on the realities of the affected people has
been firmly laid upon which science can build on to solve the problem in a sustainable and equitable way.
Facilitators and Barriers to Cervical Cancer Screening Among Women in a Rural District of Northeastern Uganda, a Qualitative Study
(Dove Medical Press Limited, 2026-04-23) Ibra Mutyaba; Hellen Akurut; Racheal Nabaasa; Jonathan Limo; Emmanuel Okupa; Christine Acari Omuke; Ronald Opito
Introduction: Cervical cancer screening in Uganda has remained relatively low, with fewer than one in 10 of eligible women
screened, despite the availability of cervical cancer screening services in most health facilities. The barriers and facilitators of cervical
cancer screening in remote rural settings of Northeastern Uganda like Ngora are not yet well understood. This study therefore aimed to
assess the barriers and facilitators to cervical cancer screening among women of reproductive age in a remote rural district Ngora,
Northeastern Uganda.
Methods: This study employed a qualitative approach to gather in-depth insight into the barriers and facilitators of cervical cancer
screening. We conducted six focused group discussions (FGDs) (4 females and 2 males) with the community members and nine key
informant interviews (KIIs) with the health workers in Ngora district. The participants for FGDs were chosen through convenient
sampling while those for KIIs were chosen through purposive sampling methods. The interviews were audio-recorded and subse
quently transcribed for analysis. Data was analyzed using thematic analysis techniques to identify significant patterns and themes
related to cervical cancer screening behaviors, while inductive coding was conducted to identify codes and create meaning around the
texts.
Results: The facilitators of cervical cancer screening were active community sensitization, availability of screening services at
designated facilities, supportive national policies, and integration with other health services, while the barriers included myths and
misconceptions about cervical cancer screening, stock-outs of essential commodities for screening, long distances to the health
facilities, limited human resources, and informal costs charged by the health facilities.
Conclusion: Improving cervical cancer screening uptake requires a multi-pronged approach that strengthens health systems,
addresses myths and misinformation, reduces financial and logistical burdens, and mobilizes community support.
Keywords: cervical cancer, facilitators, barriers, community sensitization
Factors associated with modern contraceptive use among sexually active youths attending secondary schools in Mbale City, Uganda
(PLOS, 2025-10-03) Mary Abwola Olwedo; Nelson Bunani
Sexual and reproductive health of youths constitutes a significant public health
challenge because of the high risk for morbidity and mortality. There is low uptake
of modern contraceptives among the sexually active youths despite availability. We
investigated the factors associated with the uptake of modern contraceptives among
youths attending secondary schools in Mbale City. This was a cross-sectional study
that enrolled 2,690 students from six purposively selected high-volume secondary
schools in Mbale City. Data were collected using a validated semi-structured
questionnaire and analyzed using descriptive statistics and multivariable logistic
regression to identify factors associated with modern contraceptive use. The factors
associated with modern contraceptive were stratified by sex. Statistical significance
was set at 5% confidence level. Out of 2690 participants, 38.0% were sexually active.
The proportion of sexually active participants who had ever used modern contra
ceptives was 60.9%. Factors associated with modern contraceptive use among
male participants were not knowing the fertility days of the female (AOR = 0.49; 95%
CI: 0.32-0.77; p = 0.002) and not receiving health education from a health worker
(AOR = 0.44; 95% CI: 0.30-0.64; p < 0.001). Among females, factors associated with
modern contraceptive use were knowledge of fertility days (AOR = 0.39; 95% CI:
0.18-0.85; p = 0.018), history of abortion (AOR = 0.10; 95% CI: 0.02-0.62; p = 0.014),
and receiving health education from a health worker (AOR = 0.36; 95% CI: 0.22-0.59;
p < 0.001). Modern contraceptive use was low compared to the national average,
with knowledge of fertility days and health education significantly influencing uptake.
Among males, lack of fertility knowledge and absence of health education were
associated with low use of modern contraceptives. Among females, knowledge of
fertility, history of abortion, and health education were key factors. Strengthening
school-based sexuality education and increasing health worker-led reproductive
health counselling can improve modern contraceptive knowledge and uptake, with
gender-specific interventions needed to address barriers to access and use.
Bottlenecks and opportunities towards achieving the targeted 95-95-95 HIV services in a rural district in Eastern Uganda
(Health Services gateway, 2022-12-21) Monkya Samuel Namenkere; Ayaa Mary Stella; Sukuku Linda; Kharono Juliet; Mugabi Charles; Chelangat Benina; Mary Abwola Olwedo; Carol Nabasumba; Paul Oboth; Julius Osele; Rebecca Nekaka; Jacob Stanley Iramiot
Background: Uganda has made progress in reducing its HIV prevalence from 7.3% in 2011 to 6% in 2017, however, more needs to be done to meet the World Health Organization (WHO) target of 95% of the population knowing their HIV status, 95% enrolled on treatment and 95% achieving viral suppression. This study aimed to assess the bottlenecks and opportunities towards achieving the 95 95 95 targeted HIV services in the Bukedea district.
Methods: A mixed-methods cross-sectional study was conducted in the Bukedea district covering males and females aged 18-65 years who had consented to participate in the study. We used a purposive sampling procedure to select our study participants. Qualitative data was collected through focus group discussions, key informant interviews, and document reviews for quantitative data. Quantitative data were analyzed using STATA v 14 whereas qualitative data were analyzed using the thematic analysis approach.
Results: The challenges were grouped as patient-related, medication-related, and facility-related. The patient-related challenges were stigma, fear of taking the medication, poor nutrition, long distances, alcoholism, busy working schedules, and domestic violence. The medication-related challenges were side effects and pill burden. The facility-related challenges were inadequate pretest counseling and stock-outs. The use of anti-retroviral drugs (ART) was common in piggery and poultry and the sources of these drugs were reported to be the people on ART and the health workers.
The opportunities included home-based counseling, organizing more outreaches, counseling and health education, targeted testing, and strengthening the Village Health Teams (VHT) networks.
Conclusions: The study revealed that the major challenges towards achieving the targeted 95-95-95 HIV services were stigma, inadequate pre-test counseling, fear of disclosure, and poor adherence due to alcoholism, sharing of drugs with animals and partners. The use of anti-retroviral drugs in animal husbandry was common in the Bukedea District.
Keywords
enrolment to care, HIV testing, Viral load suppression, HIV infection, HAART, expert clients, HIV care, Adherence to HIV treatment.
Second-line virologic failure and elevated bilirubin as a potential surrogate marker of ART adherence among people living with HIV in Eastern Uganda
(Springer Nature, 2026) Simiyu Melap Lynnet; Jacob Stanley Iramiot; Rebecca Nekaka; Patrick Okware; Mary Abwola Olwedo; Joshua Epuitai; Paul Oboth; Herbert Itabangi; Lydia V. N. Ssenyonga; Julius Nteziyaremye; David Okia
Second-line antiretroviral therapy (ART) failure remains a challenge in HIV Programs. We conducted a cross
sectional study among people living with HIV on second-line ART in Eastern Uganda to determine the prevalence
and associated factors of virological failure and to assess elevated serum bilirubin as a surrogate marker of
adherence. The prevalence of virological failure was 7.5%. Elevated bilirubin showed poor sensitivity and specificity
for predicting adherence or virological failure. The findings highlight the need for routine viral load monitoring, as
bilirubin is not a reliable surrogate marker of treatment adherence or virological failure.
Keywords Second-line virological failure, Elevated bilirubin, And adherence