Revelations of HIV-infected patients treated with highly active antiretroviral therapy (HAART) in rural Uganda.

The purpose of this qualitative study was to explore the psychosocial changes revealed by persons living with HIV/AIDS (PLWHA) in western Uganda as a result of the introduction of highly active antiretroviral therapy (HAART). Fourteen participants were interviewed on two occasions. Two focus groups discussions were also conducted. Patients experienced important personal benefits as a result of HAART and the resulting clinical improvement. These benefits included a restoration of hope, self-esteem and personal agency. Patients were also relieved of the great fear which they had about the conditions of their death. The financial and social struggles introduced by AIDS illness continued after the introduction of HAART. The conclusion is that the HAART programs should provide more holistic care to patients to address the persistent family issues identified in this study.

Tuberculosis and human immunodeficiency virus: exploring stigma in a community in western Uganda.

The threat of tuberculosis (TB) in Uganda cannot be considered in isolation from the HIV/AIDS epidemic. Stigma contributes to delays in seeking treatment and poor adherence for both TB and HIV patients. This study aims to assess and describe stigma and predictors of stigma related to TB and HIV in the population of western Uganda. This was a cross-sectional mixed methods study. A survey was administered to 360 individuals, randomly selected from one district in western Uganda. Participants were classified as low/high stigma based on weighted scores built from survey questions. Logistic regression was used to determine significant predictors for high stigma. Six focus groups were conducted to inform survey findings; themes were developed using content analysis. Twenty-six per cent of respondents were found to have stigmatising attitudes towards HIV and 47% towards TB. Multivariate logistic regression models included age, sex, marital status, education, residence and having a friend with HIV/TB. Those who had an HIV-positive friend were less likely to have high HIV stigma (OR: 0.41, 95% CI: 0.23-0.72). Those with secondary education or more were half as likely to have high TB stigma (OR: 0.50, 95% CI: 0.27-0.91). Focus group participants felt that "normalisation" of HIV has contributed to reduced HIV stigma, but there is still a fear of being recognised at the HIV clinic. TB stigma causes patients to remain silent instead of seeking care. Fear of TB is driven by the assumption that "TB means HIV". Declining HIV stigma is encouraging but more effort needs to be made to improve confidentiality. TB stigma is high and is likely affecting care seeking behaviour; TB awareness campaigns should be a priority and emphasise the treatability and curability of TB, regardless of HIV status.

Long-term observation and mortality of children with nodding syndrome in western Uganda, 1994 - 2018.

PURPOSE: To assess long-term mortality and causes of death in children with nodding syndrome, an epileptic disorder of sub-Sahara Africa. METHODS: Ten children with nodding syndrome were followed over 24 years. The mortality rate was determined as the number of deaths per 1000 person-years of observation. The standard mortality ratio (SMR) was calculated as the number of observed deaths divided by the number of expected deaths in the general population. Patients were started on phenobarbital and treatment response was monitored during the first 20 months of follow-up. RESULTS: During an observation period of 89.8 person-years, eight patients had died, one patient was found alive, and one patient had been lost to follow-up. This corresponded to a mortality rate of 89.1 deaths per 1000 person-years and a SMR of 21.4 (95 % CI 6.6-36.2). Five deaths were related to status epilepticus, in two cases occurring after inadvertent drug withdrawal. All patients responded on phenobarbital with a reduction of seizure frequency but only four reached a seizure-free period of at least 6 months. CONCLUSIONS: This long-term follow-up demonstrated high mortality in patients with nodding syndrome. Anti-seizure treatment with phenobarbital was of moderate efficacy. Abrupt interruption of phenobarbital was found leading to seizure aggravation, status epilepticus, and death. Our findings point out the importance of securing continuity of treatment access once anti-seizure therapy is included in health services in resource-poor settings. More rigorous observations and controlled studies are needed to improve the therapeutic options for nodding syndrome.

Tuberculosis in the era of infection with the human immunodeficiency virus: assessment and comparison of community knowledge of both infections in rural Uganda.

BACKGROUND: In Uganda, despite a significant public health burden of tuberculosis (TB) in the context of high human immunodeficiency virus (HIV) prevalence, little is known about community knowledge of TB. The purpose of this study was to assess and compare knowledge about TB and HIV in the general population of western Uganda and to examine common knowledge gaps and misconceptions. METHODS: We implemented a multi-stage survey design to randomly survey 360 participants from one district in western Uganda. Weighted summary knowledge scores for TB and HIV were calculated and multiple linear regression (with knowledge score as the dependant variable) was used to determine significant predictors. Six focus group discussions were conducted to supplement survey findings. RESULTS: Mean (SD) HIV knowledge score was 58 (12) and TB knowledge score was 33 (15), both scores out of 100. The TB knowledge score was statistically significantly (p < 0.001) lower. Multivariate regression models included age, sex, marital status, education, residence, and having a friend with HIV/TB as independent variables. TB knowledge was predicted by rural residence (coefficient = -6.27, 95% CI: -11.7 to -0.8), and age ≥45 years (coefficient = 7.45, 95% CI: 0.3-14.6). HIV knowledge was only predicted by higher education (coefficient = 0.94, 95%CI: 0.3-1.6). Focus group participants mentioned various beliefs in the aetiology of TB including sharing cups, alcohol consumption, smoking, air pollution, and HIV. Some respondents believed that TB was not curable. CONCLUSION: TB knowledge is low and many misconceptions about TB exist: these should be targeted through health education programs. Both TB and HIV-infection knowledge gaps could be better addressed through an integrated health education program on both infections, whereby TB program managers include HIV information and vice versa.

Unmet need for effective family planning in HIV-infected individuals: results from a survey in rural Uganda.

BACKGROUND AND METHODOLOGY: This study determined the unmet need for family planning among HIV-positive and HIV-negative individuals living in western Uganda. Semi-structured interviews were conducted with individuals who were randomly selected from HIV testing lists. Of those individuals, further analysis was conducted on a subset of 206 participants who did not desire more children and were not using a highly effective method of contraception. Descriptive, bivariate and multivariate methods were performed to assess the relationship between HIV status and unmet need for effective family planning. RESULTS: The unmet need for effective family planning was much greater in HIV-infected individuals compared to HIV-negative individuals [75.0% vs 33.8%, adjusted odds ratio (OR) 3.97, 95% confidence interval (CI) 1.97-8.03, p<0.001]. Females were more likely to report an unmet need compared to males (69.0% vs 49.5%; adjusted OR 1.94, 95% CI 0.94-4.00, p=0.071). Other predictors of unmet need for effective family planning were older age (adjusted OR 1.08 for each year of age, 95% CI 1.00-1.16, p=0.018) and single/cohabiting vs being married (OR 2.36, 95% CI 1.16-4.80, p=0.036). Being on antiretroviral therapy was not a predictor of having a lower unmet need for effective family planning methods. DISCUSSION AND CONCLUSIONS: There is high unmet need for effective family planning in HIV-positive study participants in a region of western Uganda, which should be of concern. This suggests that HIV-infected individuals do not want to use family planning or encounter barriers to accessing and utilising family planning services. Family planning programmes and HIV care and prevention services have to work together more effectively to create services conducive to clients from both programmes.

Enough children: reproduction, risk and "unmet need" among people receiving antiretroviral treatment in western Uganda.

In this paper, we use survey (n = 87) and interview (n = 30) data to investigate orientations towards future childbearing among people receiving antiretroviral treatment and their family members in western Uganda. We investigate how reproductive options are perceived, by those receiving treatment and those closest to them, and consider what these perceptions suggest about the existence of an "unmet need" for birth control for women with HIV. While most people say they do not wish to have more children while on treatment, this intention coexists with contradictory desires for the benefits and happiness that more children might bring. We argue that the factors influencing birth desires and outcomes are so complex and contradictory that it is virtually impossible to predict demand or uptake of birth control as more and more people with AIDS in Africa gain the ability to access antiretroviral treatment.

Comparing antiretroviral treatment outcomes between a prospective community-based and hospital-based cohort of HIV patients in rural Uganda.

BACKGROUND: Improved availability of antiretroviral therapy in sub-Saharan Africa is intended to benefit all eligible HIV-infected patients; however in reality antiretroviral services are mainly offered in urban hospitals. Poor rural patients have difficulty accessing the drugs, making the provision of antiretroviral therapy inequitable. Initial tests of community-based treatment programs in Uganda suggest that home-based treatment of HIV/AIDS may equal hospital-based treatment; however the literature reveals limited experiences with such programs. THE RESEARCH: This intervention study aimed to; 1) assess the effectiveness of a rural community-based ART program in a subcounty (Rwimi) of Uganda; and 2) compare treatment outcomes and mortality in a rural community-based antiretroviral therapy program with a well-established hospital-based program. Ethics approvals were obtained in Canada and Uganda. RESULTS AND OUTCOMES: Successful treatment outcomes after two years in both the community and hospital cohorts were high. All-cause mortality was similar in both cohorts. However, community-based patients were more likely to achieve viral suppression and had good adherence to treatment. The community-based program was slightly more cost-effective. Per capita costs in both settings were unsustainable, representing more than Uganda's Primary Health Care Services current expenditures per person per year for all health services. The unpaid community volunteers showed high participation and low attrition rates for the two years that this program was evaluated. CHALLENGES AND SUCCESSES: Key successes of this study include the demonstration that antiretroviral therapy can be provided in a rural setting, the creation of a research infrastructure and culture within Kabarole's health system, and the establishment of a research collaboration capable of enriching the global health graduate program at the University of Alberta. Challenging questions about the long-term feasibility and sustainability of a community-based ARV program in Uganda still remain. THE PARTNERSHIP: This project is a continuation of previous successful collaborations between the School of Public Health of Makerere University, the School of Public Health of University of Alberta, the Kabarole District Administration and the Kabarole Research and Resource Center.

Impact of antiretroviral therapy on fertility desires among HIV-infected persons in rural Uganda.

BACKGROUND: Little is known about the fertility desires of HIV infected individuals on highly active antiretroviral therapy (HAART). In order to contribute more knowledge to this topic we conducted a study to determine if HIV-infected persons on HAART have different fertility desires compared to persons not on HAART, and if the knowledge about HIV transmission from mother-to-child is different in the two groups. METHODS: The study was a cross-sectional survey comparing two groups of HIV-positive participants: those who were on HAART and those who were not. Semi-structured interviews were conducted with 199 HIV patients living in a rural area of western Uganda. The desire for future children was measured by the question in the questionnaire "Do you want more children in future." The respondents' HAART status was derived from the interviews and verified using health records. Descriptive, bivariate and multivariate methods were used to analyze the relationship between HAART treatment status and the desire for future children. RESULTS: Results from the multivariate logistic regression model indicated an adjusted odds ratio (OR) of 1.08 (95% CI 0.40-2.90) for those on HAART wanting more children (crude OR 1.86, 95% CI 0.82-4.21). Statistically significant predictors for desiring more children were younger age, having a higher number of living children and male sex. Knowledge of the risks for mother-to-child-transmission of HIV was similar in both groups. CONCLUSIONS: The conclusions from this study are that the HAART treatment status of HIV patients did not influence the desire for children. The non-significant association between the desire for more children and the HAART treatment status could be caused by a lack of knowledge in HIV-infected persons/couples about the positive impact of HAART in reducing HIV transmission from mother-to-child. We recommend that the health care system ensures proper training of staff and appropriate communication to those living with HIV as well as to the general community.

Risk factors and trends in childhood stunting in a district in Western Uganda.

OBJECTIVES: This representative, cross-sectional study conducted in Kabarole District, Western Uganda, determined the nutritional status of children 6-59 months of age and established a trend in the childhood stunting rates. METHODS: A multi-stage random cluster sampling was performed to select 322 children and their principal caregivers. Anthropometric measurements were taken from the children and compared with a reference population and the children's principle caregivers were interviewed. RESULTS: Childhood stunting was high with 43.0% of all children having a z-score of less than or equal to -2. Predictive factors for stunting were a low economic status of the household, poor health of the child's caregiver, residence located at a long distance from a health unit and use of a contaminated water source. The comparison of our study results with an earlier nutritional study in Kabarole District revealed that there is an increasing trend of childhood stunting over the years of 28.0% [95% confidence interval (CI) 22.1-33.1%] in 1989 vs 43% (95% CI 37.6-48.8%) in 2006 and that stunting rates in Kabarole District were much higher compared to national data. CONCLUSION: The high stunting rates in children and the increasing trend in stunting needs further investigations. It should also be determined why stunting rates in children in Kabarole District are much higher than the national average. There is a need for better nutritional interventions as part of the district's public health programs.

Breastfeeding practices of HIV-positive and HIV-negative women in Kabarole district, Uganda.

Ugandan policy regarding infant feeding for HIV-positive mothers is replacement feeding (RF), if feasible; otherwise, exclusive breastfeeding (EBF) for 3 months is advised (or EBF for 6 months, if RF is still not feasible). HIV-negative mothers should practise EBF for 6 months. The study objective was to explore the association between maternal HIV status and breastfeeding practices in Kabarole, Uganda. Data were collected from questionnaires administered at home to 182 women (44 HIV-positive and 138 HIV-negative) 3 months post-partum and from medical charts. The HIV-negative women were matched on delivery date to HIV-positive women at a ratio of 3:1. Interviewers were blinded to HIV status. There was no statistically significant association between adherence to Ugandan national feeding guidelines and maternal HIV status in bivariate analysis [odds ratio (OR) = 1.52; confidence interval (CI): 0.76-3.04]. Multivariate analyses showed a significant association between adherence to feeding guidelines and child illness (OR = 0.40; CI: 0.21-0.79) and between adherence to feeding guidelines and rural residence in Burahya county (OR = 2.43; CI: 1.15-5.13). Many mothers do not follow the feeding guidelines for HIV infection. This region-specific information on breastfeeding practice determinants will be used to inform local Prevention of Mother-to-Child Transmission (PMTCT) programmes. The nature of the association between child illness and EBF should be further explored.

"Living by the hoe" in the age of treatment: perceptions of household well-being after antiretroviral treatment among family members of persons with AIDS.

This paper considers the effects of antiretroviral treatment on the households of person with AIDS in western Uganda. Interviews were carried out with 110 co-resident "treatment partners" of people receiving treatment. We discuss these family members' accounts of the impact of sickness, followed by treatment, on their household's livelihood, defined as the activities needed to obtain and process the resources required to sustain the households. The household's ability to muster labour for subsistence agriculture was of paramount concern when family members considered what treatment meant for the households. While they were very happy with the treatment, they said that households have not yet recovered from the shock of AIDS sicknesses.

Gender differences in antiretroviral treatment outcomes of HIV patients in rural Uganda.

Gender differences in treatment outcomes of 305 persons living with HIV receiving antiretroviral treatment (ART) in Kabarole district, western Uganda, were evaluated. The primary treatment outcome was virological suppression defined as HIV-1 RNA viral load (VL) <400 copies/ml and the secondary outcome measure was the increase in the CD4 cell count after six months on ART. Statistical analysis included descriptive, univariate, and multivariate methods. Proportionally, more females chose to seek treatment compared to males. After six months of treatment, females were more likely to have viral suppression (VL > 400 copies/ml) as compared to males (odds ratio 2.14, 95% confidence interval 0.99-4.63, p=0.05). While females had a significantly higher baseline CD4 cell count at initiation of treatment compared to males, the increase in CD4 cell count after six months on ART was similar in males and females. The reasons for better ART outcomes for females should be further investigated. Ideally, ART programs should work toward equitable treatment outcomes for men and women, if the cause of the gender differential lies in patient behavior and the way ART services are delivered.

Case Report: Nakalanga Syndrome Revisited: Long-Term Follow-Up of a Patient Living in Western Uganda, 1994-2018.

Nakalanga syndrome is a childhood developmental disorder that has been reported from various parts of sub-Saharan Africa with the major sign of retarded growth, regularly combined with physical deformities, impaired mental and pubertal development, and epilepsy. We present a follow-up over a 24-year period of a patient living in the Itwara onchocerciasis focus of western Uganda. We demonstrate the strong similarity of Nakalanga syndrome to the more recently described Nodding syndrome, and we discuss the possible causation of both disorders by onchocerciasis. We suggest that the growing knowledge about the tight interconnections between Nakalanga and nodding syndrome, other forms of epilepsy, and onchocerciasis should be taken into consideration in a revised classification system.

Public knowledge and attitudes toward HIV/AIDS and antiretroviral therapy in Kabarole district, western Uganda.

A study on knowledge about HIV/AIDS and antiretroviral therapy (ART) was conducted in the general population of a rural district in western Uganda. Three hundred seventy-two participants were selected by random cluster sampling and interviewed with an interview-administered questionnaire. Data were analyzed quantitatively with descriptive, univariate and linear multivariate statistical analysis with the knowledge score about ART as the dependent variable. The results indicate that the mean knowledge was 7.7 in a scale from 0 to 13. Predictor for better ART knowledge was a higher educational status of the participants. Older participants over 50 years were less ART knowledgeable. Only 19% of the participants have been tested for HIV. The conclusions are that the ART knowledge in this population is remarkably high which is reaffirming and important for achieving a high adherence to ART. Of concern is the low proportion of persons tested for HIV in this general population. Kabarole district seems to be receptive and capable for intensifying HIV testing which is a precondition for the ART roll-out.

"No Stone Left Unturned": how the public explains the Ugandan success story.

We conducted a public poll to assess the public's perception about changes in HIV prevalence and its causes in a township in western Uganda. The main questions related to the declining HIV prevalence and its interpretation, as well as to the "Ugandan success story." The study used a qualitative methodology; we interviewed 68 citizens in eight focus group discussions. The majority stated that the HIV prevalence had declined in their town. Of those respondents, most cited behaviour changes related to Uganda's ABC strategy as their explanation of the declining trends. Those who said that a decline in HIV had taken place also stated that they believed in the Ugandan success story. Our study concludes that it is important to involve the public on important health issues such as HIV/AIDS in order to obtain more valid results by combining scientific findings with public/indigenous knowledge.

Who's talking? Communication between health providers and HIV-infected adults related to herbal medicine for AIDS treatment in western Uganda.

Communication between patients and physicians about herbal medicine is valuable, enabling physicians to address issues of potential herb-drug interactions and ensuring appropriate medical care. As seemingly harmless herbal remedies may have detrimental interactions with various HIV antiretroviral drugs, the importance of communication is intensified, but often stifled around the use of herbal medicine in the treatment of HIV/AIDS. In western Uganda, 137 HIV-infected adults attending conventional HIV/AIDS treatment programmes (67 of whom were receiving antiretroviral therapy) shared their experiences and perceptions about traditional herbal medicine and related patient-physician communication issues through interviews and focus group discussions. Although close to 64% of respondents reported using herbal medicine after being diagnosed with HIV, only 16% of these respondents had informed their conventional medical practitioners about using these herbs. Furthermore, only 13% of antiretroviral therapy recipients had inquired about concurrent herb-antiretroviral drug use with their HIV/AIDS treatment providers, largely because they perceived a low acceptance and support for herbal medicine by conventional medical practitioners. Importantly however, almost 68% of HIV-infected adults indicated they would be willing to discuss herbal medicine use if directly asked by a conventional medical practitioner, and the overwhelming majority (91%) said they were amenable to following physician advice about herbal medicine. As such, improved patient-physician communication about herbal medicine is needed, and we recommend that herbal medicine histories be completed when patient histories are taken. Also, HIV/AIDS treatment programmes should be encouraged to develop specific patient-physician communication standards and best practice guidelines to ensure that patients can make informed decisions about herb and pharmaceutical drug co-therapy based on known risks, particularly in the case of AIDS patients receiving antiretroviral therapy. Communication about herbal medicine usage should be viewed as a timely and cost-effective component of antiretroviral therapy programmes, one which may contribute to the overall success of AIDS treatment in Africa.

Factors associated with the self-reported health status of female caregivers of AIDS patients.

A cross-sectional study was conducted on women who were family caregivers of spouses with AIDS, living in the Bumbu Zone, Kinshasa, Democratic Republic of Congo. Eighty caregivers were randomly selected from a client visitation list of the home-based care program for AIDS patients. A semistructured questionnaire was used in face-to-face interviews. A self-reported health status score was calculated using five items from the questionnaire. The self-reported health of female caregivers indicates poor health. Lower caregiver health is associated with lower income, rented accommodation, little support, and stigmatization of the caregiver by relatives.

Onchocerciasis-Associated Epilepsy with Head Nodding Seizures-Nodding Syndrome: A Case Series of 15 Patients from Western Uganda, 1994.

Nodding syndrome (NS) is an encephalopathy characterized by the core symptom of epileptic head nodding seizures, affecting children at the age between 3 and 18 years in distinct areas of tropical Africa. A consistent correlation with onchocerciasis was found, but so far, the causation of NS has not been fully clarified. With a systematic analysis of features of a cohort of epilepsy patients examined in the Itwara onchocerciasis focus of western Uganda in 1994, we provide evidence that NS actually occurred in this area at this time, and we demonstrate a correlation between prevalence of NS and that of onchocerciasis in different villages. Following the elimination of onchocerciasis by community-directed treatment with ivermectin and ground larviciding, our data provide a baseline to examine the question whether NS will disappear once its putative cause has been removed.

Use of traditional herbal medicine by AIDS patients in Kabarole District, western Uganda.

The objective of this cross-sectional study was to assess the use of traditional herbal medicine by AIDS patients in Kabarole District, western Uganda. Using systematic sampling, 137 AIDS patients were selected from outpatient departments of 3 hospitals and interviewed via questionnaire. The questions related to such areas as type and frequency of herbal medicine intake, concomitant herb-pharmaceutical drug use (including herb-antiretroviral drug cotherapy), and the perceived effectiveness of herbal medicine. Overall, 63.5% of AIDS patients had used herbal medicine after HIV diagnosis. Same-day herbal medicine and pharmaceutical drugs use was reported by 32.8% of AIDS patients. Patterns of traditional herbal medicine use were quite similar between those on antiretroviral therapy and those who received supportive therapy only. The primary conclusion is that AIDS outpatients commonly use herbal medicine for the treatment of HIV/AIDS. Pharmacological interactions between antiretroviral drugs and traditional herbal medicines need to be further examined.

Knowledge of and perceptions about sexually transmitted diseases and pregnancy: a qualitative study among adolescent students in Uganda.

This article reports the findings of a qualitative research study carried out in Kabarole district, western Uganda. Knowledge of and perceptions about HIV/AIDS and pregnancy and how both relate to one another were elucidated from eight focus-group discussions with 38 female and 32 male secondary students from four different schools. Widespread misinformation and misconceptions about contraceptives still exist as previously found in this area. There was a serious gap in knowledge and understanding of 'dual protection' against sexually transmitted diseases, including HIV/AIDS, and against pregnancy. Fertility was very highly valued, and many girls stated that they would want a child even if they were HIV-positive. Responses of girls showed that they were quite assertive in making decisions to use contraceptives. The reasons for students not being able to understand the interconnectedness of sexually transmitted diseases and pregnancy may lie in the fragmented fashion in which relevant health education is delivered through two separate programmes.