Browsing by Author "Nabukalu, Doreen"
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Item Challenges and solutions to cancer‑related financial toxicity according to Australian health professionals: qualitative results from a national survey(Supportive Care in Cancer, 2023) McLoone, Jordana; Chan, Raymond J.; Varlow, Megan; Whittaker, Kate; Lindsay, Daniel; Thamm, Carla; Leigh, Lillian; Muir, Laura; Mackay, Gillian; Karikios, Deme J.; Hunt, Lee; Hobbs, Kim; Goldsbury, David E.; Nabukalu, Doreen; Gordon, Louisa G.To qualitatively explore Australian healthcare professionals’ perspectives on how to improve the care and management of cancer-related financial toxicity, including relevant practices, services, and unmet needs. Methods We invited healthcare professionals (HCP) who currently provide care to people with cancer within their role to complete an online survey, which was distributed via the networks of Australian clinical oncology professional associations/organisations. The survey was developed by the Clinical Oncology Society of Australia’s Financial Toxicity Working Group and contained 12 open-ended items which we analysed using descriptive content analysis and NVivo software. Results HCPs (n = 277) believed that identifying and addressing financial concerns within routine cancer care was important and most believed this to be the responsibility of all HCP involved in the patient’s care. However, financial toxicity was viewed as a “blind spot” within a medical model of healthcare, with a lack of services, resources, and training identified as barriers to care. Social workers reported assessment and advocacy were part of their role, but many reported lacking formal training and understanding of financial complexities/laws. HCPs reported positive attitudes towards transparent discussions of costs and actioning cost-reduction strategies within their control, but feelings of helplessness when they perceived no solution was available. Conclusion Identifying financial needs and providing transparent information about cancer-related costs was viewed as a cross-disciplinary responsibility, however, a lack of training and services limited the provision of support. Increased cancer-specific financial counselling and advocacy, via dedicated roles or developing HCPs’ skills, is urgently needed within the healthcare system.Item Community health workers trained to conduct verbal autopsies provide better mortality measures than existing surveillance: Results from a cross-sectional study in rural western Uganda(PLoS ONE, 2019) Nabukalu, Doreen; Ntaro, Moses; Seviiri, Mathias; Reyes, Raquel; Wiens, Matthew; Sundararajan, Radhika; Mulogo, Edgar; Boyce, Ross M.In much of sub-Saharan Africa, health facilities serve as the primary source of routine vital statistics. These passive surveillance systems, however, are plagued by infrequent and unreliable reporting and do not capture events that occur outside of the formal health sector. Verbal autopsies (VA) have been utilized to estimate the burden and causes of mortality where civil registration and vital statistics systems are weak, but VAs have not been widely employed in national surveillance systems. In response, we trained lay community health workers (CHW) in a rural sub-county of western Uganda to conduct VA interviews in order to assess the feasibility of leveraging CHW to measure the burden of disease in resource limited settings. Methods and findings Trained CHWs conducted a cross-sectional survey of the 36 villages comprising the Bugoye sub-county to identify all deaths occurring in the prior year. The sub county has an estimated population of 50,249, approximately one-quarter of whom are children under 5 years of age (25.3%). When an eligible death was reported, CHWs administered a WHO 2014 VA questionnaire, the results of which were analyzed using the InterVA-4 tool. To compare the findings of the CHW survey to existing surveillance systems, study staff reviewed inpatient registers from neighboring referral health facilities in an attempt to match recorded deaths to those identified by the survey. Overall, CHWs conducted high quality VA interviews on direct observation, identifying 230 deaths that occurred within the sub-county, including 77 (33.5%) among children under five years of age. More than half of the deaths (123 of 230, 53.5%) were reported to have occurred outside a health facility and thus would not be captured by passive surveillance. More than two-thirds (73 of 107, 68.2%) of facility deaths took place in one of three nearby hospitals, yet only 35 (47.9%) were identified on our review of inpatient registers. Consistent with previous VA studies, the leading causes of death among children under five years of age were malaria (19.5%), prematurity (19.5%), and neonatal pneumonia (15.6%). while among adults, HIV/AIDS-related deaths illness (13.6%), pulmonary tuberculosis (11.4%) and malaria (8.6%) were the leading causes of death. No child deaths identified from inpatient registers listed HIV/AIDS as a cause of death despite 8 deaths (10.4%) attributed to HIV/AIDS as determined by VA. Conclusions Lay CHWs are able to conduct high quality VA interviews to capture critical information that can be analyzed using standard methodologies to provide a more complete estimate of the burden and causes of mortality. Similar approaches can be scaled to improve the measurement of vital statistics in order to facilitate appropriate public health interventions in rural areas of sub-Saharan Africa.Item Exploring the ‘citizen organization’: an evaluation of a regional Australian community-based palliative care service model(Palliative Care and Social Practice, 2024) Rosenberg, John; Flynn, Trudi; Merollini, Katharina; Linn, Josie; Nabukalu, Doreen; Davis, CindyLittle Haven is a rural, community-based specialist palliative care service in Gympie, Australia. Its goals are to provide highest quality of care, support and education for those experiencing or anticipating serious illness and loss. Families and communities work alongside clinical services, with community engagement influencing compassionate care and support of dying people, their families and communities. Public Health Palliative Care promotes community engagement by community-based palliative care services and is grounded in equal partnerships between civic life, community members, patients and carers, and service providers. This takes many forms, including what we have termed the ‘citizen organization’. Objectives This paper reports on an evaluation of Little Haven’s model of care and explores the organization’s place as a ‘citizen’ of the community it services. Design A co-designed evaluation approach utilizing mixed-method design is used. Methods Multiple data sources obtained a broad perspective of the model of care including primary qualitative data from current patients, current carers, staff, volunteers and organizational stakeholders (interviews and focus groups); and secondary quantitative survey data from bereaved carers. Thematic analysis and descriptive statistics were generated. Results This model of care demonstrates common service elements including early access to holistic, patient/family-centred, specialized palliative care at little or no cost to users, with strong community engagement. These elements enable high-quality care for patients and carers who describe the support as ‘over and above’, enabling good quality of life and care at home. Staff and volunteers perceive the built-in flexibility of the model as critical to its outcomes; the interface between the service and the community is similarly stressed as a key service element. Organizational stakeholders observed the model as a product of local activism and accountability to the community. Conclusion All participant groups agree the service model enables the delivery of excellent care. The construction of a community palliative care service as a citizen organization emerged as a new concept.Item Factors Motivating Traditional Healer versus Biomedical Facility Use for Treatment of Pediatric Febrile Illness: Results from a Qualitative Study in Southwestern Uganda(The American journal of tropical medicine and hygiene, 2020) Hooft, Anneka; Nabukalu, Doreen; Mwanga-Amumpaire, Juliet; Gardiner, Michael A.; Sundararajan, RadhikaFebrile illnesses, such as malaria and pneumonia, are among the most common causes of mortality in children younger than 5 years in Uganda outside of the neonatal period. Their impact could be mitigated through earlier diagnosis and treatment at biomedical facilities; however, it is estimated that a large percentage of Ugandans (70–80%) seek traditional healers for their first line of medical care. This study sought to characterize individual and structural influences on health care–seeking behaviors for febrile children. Minimally structured, qualitative interviews were conducted for 34 caregivers of children presenting to biomedical and traditional healer sites, respectively. We identified six themes that shape the pathway of care for febrile children: 1) peer recommendations, 2) trust in biomedicine, 3) trust in traditional medicine, 4) mistrust in providers and therapies, 5) economic resources and access to health care, and 6) perceptions of child health. Biomedical providers are preferred by those who value laboratory testing and formal medical training, whereas traditional healer preference is heavily influenced by convenience, peer recommendations, and firm beliefs in traditional causes of illness. However, most caregivers concurrently use both biomedical and traditional therapies for their child during the same illness cycle. The biomedical system is often considered as a backup when traditional healing “fails.” Initiatives seeking to encourage earlier presentation to biomedical facilities must consider the individual and structural forces that motivate seeking traditional healers. Educational programs and cooperation with traditional healers may increase biomedical referrals and decrease time to appropriate care and treatment for vulnerable/susceptible children.Item HIV prevalence and uptake of HIV/AIDS services among youths (15–24 Years) in fishing and neighboring communities of Kasensero, Rakai District, South Western Uganda(BMC public health, 2017) Mafigiri, Richardson; Matovu, Joseph K. B.; Makumbi, Fredrick Edward; Ndyanabo, Anthony; Nabukalu, Doreen; Sakor, Moses; Kigozi, Godfrey; Nalugoda, Fred; Wanyenze, Rhoda K.Although fishing communities have a significantly higher HIV prevalence than the general population, there is paucity of data on the burden of HIV and service utilization, particularly among the youth. We assessed the HIV prevalence and utilization of HIV prevention and treatment services among youth in Kasensero fishing community and the neighboring communities.Data were derived from the Rakai Community Cohort Study (RCCS) surveys conducted between 2013 and 2014. The RCCS is a population-based household survey that collects data annually from individuals aged 15–49 years, resident in 48 communities in Rakai and neighboring districts in Uganda. For this analysis, socio-demographic, behavioral and HIV-related data were obtained for 792 individuals aged 15–24 years. We used logistic regression to conduct bivariate and multivariable analysis to determine the factors that are independently associated with HIV-positive status and their corresponding 95% confidence intervals. Data were analyzed using STATA version 13.Overall HIV prevalence was 19.7% (n = 155); higher in Kasensero (n = 141; 25.1%) and Gwanda (n = 8; 11%) than in Kyebe (n = 6; 3.9%), p < 0.001 and among females (n = 112; 26.0%) than males (n = 43; 12.0%), p < 0.001. Uptake of HIV testing was high in both HIV-positive (n = 136; 89.5%) and HIV-negative youth (n = 435; 92%). Consistent condom use was virtually non-existent in HIV-positive youth (n = 1; 0.6%) compared to HIV-negative youth (n = 20; 4.2%). Only 22.4% (n = 34) of the HIV-positive youth were receiving antiretroviral therapy (ART) in 2013–2014; higher in the HIV-positive females (n = 31; 28.4%) than HIV-positive males (n = 03; 6.7%). Slightly more than half of males (n = 134; 53.8%) reported that they were circumcised; the proportion of circumcised youth was higher among HIV-negative males (n = 122; 58%) than HIV-positive males (n = 12; 27.9%). Factors significantly associated with HIV-positive status included living in Kasensero landing site (adjusted Odds Ratio [aOR] = 5.0; 95%CI: 2.22–13.01) and reporting one (aOR = 5.0; 95%CI: 1.33–15.80) or 2+ sexual partners in the past 12 months (aOR = 11.0; 95% CI; 3.04–36.72).The prevalence of HIV is high especially among young females and in landing site communities than in the peripheral communities. Uptake of HIV prevention and treatment services is very low. There is an urgent need for youth-friendly services in these communities.Item HIV prevalence and uptake of HIV/AIDS services among youths (15–24 Years) in fishing and neighboring communities of Kasensero, Rakai District, South Western Uganda(BMC public health, 2017) Mafigiri, Richardson; Matovu, Joseph K. B.; Makumbi, Fredrick Edward; Ndyanabo, Anthony; Nabukalu, Doreen; Sakor, Moses; Kigozi, Godfrey; Nalugoda, Fred; Wanyenze, Rhoda K.Although fishing communities have a significantly higher HIV prevalence than the general population, there is paucity of data on the burden of HIV and service utilization, particularly among the youth. We assessed the HIV prevalence and utilization of HIV prevention and treatment services among youth in Kasensero fishing community and the neighboring communities. Method: Data were derived from the Rakai Community Cohort Study (RCCS) surveys conducted between 2013 and 2014. The RCCS is a population-based household survey that collects data annually from individuals aged 15–49 years, resident in 48 communities in Rakai and neighboring districts in Uganda. For this analysis, socio-demographic, behavioral and HIV-related data were obtained for 792 individuals aged 15–24 years. We used logistic regression to conduct bivariate and multivariable analysis to determine the factors that are independently associated with HIV-positive status and their corresponding 95% confidence intervals. Data were analyzed using STATA version 13. Results: Overall HIV prevalence was 19.7% (n = 155); higher in Kasensero (n = 141; 25.1%) and Gwanda (n = 8; 11%) than in Kyebe (n = 6; 3.9%), p < 0.001 and among females (n = 112; 26.0%) than males (n = 43; 12.0%), p < 0.001. Uptake of HIV testing was high in both HIV-positive (n = 136; 89.5%) and HIV-negative youth (n = 435; 92%). Consistent condom use was virtually non-existent in HIV-positive youth (n = 1; 0.6%) compared to HIV-negative youth (n = 20; 4.2%). Only 22.4% (n = 34) of the HIV-positive youth were receiving antiretroviral therapy (ART) in 2013–2014; higher in the HIV-positive females (n = 31; 28.4%) than HIV-positive males (n = 03; 6.7%). Slightly more than half of males (n = 134; 53.8%) reported that they were circumcised; the proportion of circumcised youth was higher among HIV-negative males (n = 122; 58%) than HIV-positive males (n = 12; 27.9%). Factors significantly associated with HIV-positive status included living in Kasensero landing site (adjusted Odds Ratio [aOR] = 5.0; 95%CI: 2.22–13.01) and reporting one (aOR = 5.0; 95%CI: 1.33–15.80) or 2+ sexual partners in the past 12 months (aOR = 11.0; 95% CI; 3.04–36.72). Conclusion: The prevalence of HIV is high especially among young females and in landing site communities than in the peripheral communities. Uptake of HIV prevention and treatment services is very low. There is an urgent need for youth-friendly services in these communities.Item HIV prevalence and uptake of HIV/AIDS services among youths (15–24 Years) in fishing and neighboring communities of Kasensero, Rakai District, South Western Uganda(BMC public health, 2017) Mafigiri, Richardson; Matovu, Joseph K. B.; Makumbi, Fredrick E.; Ndyanabo, Anthony; Nabukalu, Doreen; Sakor, Moses; Kigozi, Godfrey; Nalugoda, Fred; Wanyenze, Rhoda K.Although fishing communities have a significantly higher HIV prevalence than the general population, there is paucity of data on the burden of HIV and service utilization, particularly among the youth. We assessed the HIV prevalence and utilization of HIV prevention and treatment services among youth in Kasensero fishing community and the neighboring communities. Method Data were derived from the Rakai Community Cohort Study (RCCS) surveys conducted between 2013 and 2014. The RCCS is a population-based household survey that collects data annually from individuals aged 15–49 years, resident in 48 communities in Rakai and neighboring districts in Uganda. For this analysis, socio-demographic, behavioral and HIV-related data were obtained for 792 individuals aged 15–24 years. We used logistic regression to conduct bivariate and multivariable analysis to determine the factors that are independently associated with HIV-positive status and their corresponding 95% confidence intervals. Data were analyzed using STATA version 13. Results Overall HIV prevalence was 19.7% (n = 155); higher in Kasensero (n = 141; 25.1%) and Gwanda (n = 8; 11%) than in Kyebe (n = 6; 3.9%), p < 0.001 and among females (n = 112; 26.0%) than males (n = 43; 12.0%), p < 0.001. Uptake of HIV testing was high in both HIV-positive (n = 136; 89.5%) and HIV-negative youth (n = 435; 92%). Consistent condom use was virtually non-existent in HIV-positive youth (n = 1; 0.6%) compared to HIV-negative youth (n = 20; 4.2%). Only 22.4% (n = 34) of the HIV-positive youth were receiving antiretroviral therapy (ART) in 2013–2014; higher in the HIV-positive females (n = 31; 28.4%) than HIV-positive males (n = 03; 6.7%). Slightly more than half of males (n = 134; 53.8%) reported that they were circumcised; the proportion of circumcised youth was higher among HIV-negative males (n = 122; 58%) than HIV-positive males (n = 12; 27.9%). Factors significantly associated with HIV-positive status included living in Kasensero landing site (adjusted Odds Ratio [aOR] = 5.0; 95%CI: 2.22–13.01) and reporting one (aOR = 5.0; 95%CI: 1.33–15.80) or 2+ sexual partners in the past 12 months (aOR = 11.0; 95% CI; 3.04–36.72). Conclusion The prevalence of HIV is high especially among young females and in landing site communities than in the peripheral communities. Uptake of HIV prevention and treatment services is very low. There is an urgent need for youth-friendly services in these communities.Item Prevalence and severity of physical intimate partner violence during pregnancy among adolescents in eight sub-Saharan Africa countries : A cross-sectional study(PLOS Glob Public Health, 2024) Nyemgah, Caroline A.; Ranganathan, Meghna; Nabukalu, Doreen; Stockl, HeidiGlobally, intimate partner violence (IPV) is highly prevalent, with adolescents being particularly vulnerable, especially during pregnancy. This study examines the prevalence and severity of physical IPV among pregnant adolescents in sub-Saharan Africa (SSA). We analyzed data from Demographic Health Surveys collected between 2017–2021 from eight SSA countries, involving 2,289 ever-pregnant adolescents aged 15–19. Physical IPV during pregnancy was defined as experiencing physical harm while pregnant by a husband, former partner, current boyfriend, or former boyfriend. Severity of physical IPV included experiences such as kicking, choking, weapon threats, and serious injuries. Logistic regression analysis was conducted, with results presented as unadjusted and adjusted odds ratios with 95% confidence intervals. The prevalence of physical IPV during pregnancy among adolescents in the eight SSA countries ranged from 2.9% to 12.6%, with 5.6% experiencing severe lifetime physical IPV and 6.3% severe physical injuries. We found a strong association between physical IPV during pregnancy and severe lifetime physical IPV (aOR: 6.8, 95% CI: 4.5–10.4) and severe injuries (aOR: 9.2, 95% CI: 6.0–14.2), even after adjusting for covariates. Physical IPV during pregnancy is common among adolescents in SSA and is associated with severe physical lifetime IPV. Addressing this issue in low-resource settings requires collaborative efforts among community stakeholders, health system practitioners, and policymakers to protect vulnerable adolescent girls during pregnancy.Item Shortening ‘‘the Road’’ to Improve Engagement with HIV Testing Resources: A Qualitative Study Among Stakeholders in Rural Uganda(AIDS Patient Care and STDs, 2021) Broderick, Kathryn; Ponticiello, Matthew; Nabukalu, Doreen; Tushemereirwe, Patricia; Nuwagaba, Gabriel; King, Rachel; Mwanga-Amumpaire, Juliet; Sundararajan, RadhikaIn HIV-endemic areas, traditional healers are frequently used with, or instead of, biomedical resources for health care needs. Studies show healers are interested in and capable of supporting patients in the HIV care cascade. However, adults who receive care from healers have low engagement with HIV services. To achieve epidemic control, we must understand gaps between the needs of HIV-endemic communities and the potential for healers to improve HIV service uptake. This study's objective was to characterize stakeholder perspectives on barriers to HIV testing and approaches to mitigate barriers in a medically pluralistic, HIV-endemic region. This study was conducted in Mbarara District, a rural area of southwestern Uganda with high HIV prevalence. Participants included HIV clinical staff, traditional healers, and adults receiving care from healers. Fifty-six participants [N = 30 females (52%), median age 40 years (interquartile range, 32–51.5)] were recruited across three stakeholder groups for minimally structured interviews. Themes were identified using an inductive, grounded theory approach and linked together to create a framework explaining stakeholder perspectives on HIV testing. Stakeholders described the “road” to HIV testing as time-consuming, expensive, and stigmatizing. All agreed healers could mitigate barriers by delivering HIV testing at their practices. Collaborations between biomedical and traditional providers were considered essential to a successful healer-delivered HIV testing program. This work describes a novel approach to “shorten the road” to HIV testing, suggesting that traditional healer-delivered HIV testing holds promise to expand uptake of testing among communities with limited access to existing programs.Item The impact of management option on out-of-pocket costs and perceived financial burden among men with localised prostate cancer in Australia within 6 months of diagnosis(Australian Health Review, 2024) Lindsay, Daniel; Nabukalu, Doreen; Roberts, Matthew J.; Yaxley, John; Quinn, Stephen; Richards, Natalie; FrydenbergK, Mark; Gardiner, Robert; Lawrentschuk, Nathan; Juraskova, Ilona; Murphy, Declan G.; Gordon, Louisa G.Objective This study aimed to quantify the out-of-pocket (OOP) costs and perceived financial burden among Australian men with localised prostate cancer in the first 6 months after diagnosis, by primary management option.Methods This cost-analysis quantified OOP costs using administrative claims data and self-reported survey data. Financial burden was assessed using the COmprehensive Score for financial Toxicity–Functional Assessment of Chronic Illness Therapy (COST-FACIT) tool. Participants were recruited into a randomised control trial from public or private treatment centres in Victoria and Queensland. Generalised linear models were used to predict OOP costs and COST-FACIT scores.Results Median total OOP costs within 6 months of diagnosis for 256 Australian patients with localised prostate cancer was A$1172 (A$343–2548). Up to 50% of the sample reported A$0 costs for most medical services. Compared with those managed with active surveillance, men having active treatment had 6.4 (95% CI: 3.2–12.7) times greater total OOP costs. Management option, higher Gleason score at diagnosis and having multiple comorbidities were significant predictors of higher OOP costs. Overall high scores on the COST-FACIT indicated low levels of financial burden for the entire sample.Conclusion Largely attributable to being managed with active surveillance, Australian men diagnosed with localised prostate cancer reported relatively low OOP costs and financial burden in the first 6 months post-diagnosis. Together with clinical outcomes, clinicians can use this up to date evidence on costs and perceived financial burdens to assist localised prostate cancer patients and their families make informed decisions about their preferred management option.Item Using verbal autopsies to estimate under-5 mortality at household level in a rural area of southwestern Uganda: a cross-sectional study(The Lancet Global Health, 2018) Nabukalu, Doreen; Ntaro, Moses; Seviiri, Mathias; Sundararajan, Radhika; Reyes, Raquel; Boyce, Ross; Mulogo, EdgarIn rural Uganda, paediatric deaths that occur outside of health facilities often go unnoticed by the health system, and information on their magnitude and causes remains limited. We aimed to assess the causes of mortality of children younger than 5 years at household level in Bugoye subcounty, Uganda. Methods This cross-sectional study was done in all 35 villages of Bugoye subcounty in March and April, 2017. Community health workers collected data on all deaths in all households of the subcounty that occurred between Jan 1, 2016, and Jan 1, 2017, using 2014 WHO standardised verbal autopsy (VA) questionnaires. Causes of death were determined using the InterVA-4 algorithm and cause-specific mortality proportions were calculated using STATA. Findings The VA survey identified 77 deaths among children younger than 5 years that occurred during the study period. Nearly half of these deaths occurred among neonates (n=38 [49%]), followed by ages 1–11 months (n=21 [27%]), and 1–4 years (n=18 [23%]). Among neonates, mortality most commonly occurred in the first 24 h (n=17 [22%]), followed by 8–28 days (n=10 [13%]). The five leading causes of death for all ages were malaria (19%), prematurity (19%), neonatal pneumonia (16%), HIV/AIDS-related illnesses (10%), and acute respiratory tract infections including pneumonia (9%). Malaria was the dominant cause of death for those aged 1–11 months and 1–4 years, accounting for 44% and 33%, respectively. Prematurity and neonatal pneumonia were the leading causes of death among neonates. Most deaths (81%) captured from the VAs could not be traced from the records of the reported health facilities in the district. Interpretation There is a considerable discrepancy between mortality captured by the district and mortality in the communities. Interventions that address common causes of mortality for children younger than 5 years need to be strengthened and extended to rural health facilities. Community death registration systems are lacking and in need of revitalisation. VA surveys could be conducted by district health authorities periodically to collect mortality data in the rural and hard-to-reach areas. Funding Joint AFRO/TDR Small Grants Scheme for implementation research in infectious diseases of poverty.