Mitigating the impact of the epidemic on the households and families of older people in rural Uganda: lessons for social protection

Using quantitative and qualitative data drawn from a population cohort of 20,000 people in South-West Uganda we explored factors (household size/dependency ratios/ residence patterns/ socio-economic status) which may have exacerbated or eased the impact of the AIDS epidemic for older people (70 years and older). We found that higher socio-economic status, large family size and reciprocal relationships with kin/neighbours were particularly important in shielding older people from the negative effects of AIDS-related deaths among their children; elders without these fared badly. Our findings provide pointers for the targeting of social protection for older people in such resource-constrained settings

�We shall have gone to a higher standard�: Training village heath teams (VHTs) to use a smartphone-guided intervention to link older Ugandans with hypertension and diabetes to care

Background: It is not clear whether village health teams (VHTs) can be empowered to participate in interventions to prevent and control hypertension and diabetes in older adults in Uganda. We conducted this study in rural Uganda to establish the experiences of VHTs in managing older adults with health problems, their knowledge of hypertension and diabetes and their understanding of referral systems. We also explored their experiences with smartphones and whether VHTs could be effectively trained to use a smartphone-guided intervention to link older adults with hypertension and diabetes mellitus to care. Methods: We conducted in-depth interviews (IDIs) with and trained 20 VHTs randomly selected from Bukulula sub-county in Kalungu district from October 2017-December 2018. We used interview guides to explore topics relevant to our study objectives. VHTs were trained to measure blood sugar and blood pressure using digital machines. VHTs were trained on identifying symptoms of diabetes mellitus. Data from IDIs were analysed using thematic content analysis. Competence tests were used to evaluate the training. Results: Most of the VHTs were female (75%). All VHTs had some knowledge on hypertension and diabetes and other chronic diseases. They did not have any experience in treating older adults since they had been trained to deal mainly with children. Half of the VHTs owned smartphones. All were willing to participate in an intervention using a smartphone to link older adults with hypertension and diabetes mellitus to care. By the end of the training, all but three participants could comprehend the symptoms of diabetes and measure blood sugar and blood pressure. Conclusion: Village health teams in the study setting need training in managing the health needs of older adults before engaging with an intervention using smartphones to link older adults with diabetes mellitus and hypertension to care.</ns3:p

The framing and fashioning of therapeutic citizenship among people living with HIV taking Antiretroviral Therapy in Uganda

In this article, we examine how people living with HIV (PLWH) were able to reconceptualize or “reframe” their understanding of HIV and enhance their capacity to self-manage the condition. Two in-depth interviews were held with 38 PLWH (20 women, 18 men) selected from three government and nongovernment antiretroviral therapy (ART) delivery sites in Wakiso District, and the narratives analyzed. ART providers played an important role in shaping participants’ HIV self-management processes. Health workers helped PLWH realize that they could control their condition, provided useful concepts and language for emotional coping, and gave advice about practical self-management tasks, although this could not always be put into practice. ART providers in this setting were spaces for the development of a collective identity and a particular form of therapeutic citizenship that encouraged self-management, including adherence to ART. Positive framing institutions are important for many PLWH in resource-limited settings and the success of ART programs

Volunteer experiences and perceptions of the informed consent process: Lessons from two HIV clinical trials in Uganda.

BACKGROUND: Informed consent as stipulated in regulatory human research guidelines requires that a volunteer is well-informed about what will happen to them in a trial. However researchers are faced with a challenge of how to ensure that a volunteer agreeing to take part in a clinical trial is truly informed. We conducted a qualitative study among volunteers taking part in two HIV clinical trials in Uganda to find out how they defined informed consent and their perceptions of the trial procedures, study information and interactions with the research team. METHODS: Between January and December 2012, 23 volunteers who had been in the two trials for over 6 months, consented to be interviewed about their experience in the trial three times over a period of nine months. They also took part in focus group discussions. Themes informed by study research questions and emerging findings were used for content analysis. RESULTS: Volunteers defined the informed consent process in terms of their individual welfare. Only two of the volunteers reported having referred during the trial to the participant information sheets given at the start of the trial. Volunteers remembered the information they had been given at the start of the trial on procedures that involved drawing blood and urine samples but not information about study design and randomisation. Volunteers said that they had understood the purpose of the trial. They said that signing a consent form showed that they had consented to take part in the trial but they also described it as being done to protect the researcher in case a volunteer later experienced side effects. CONCLUSION: Volunteers pay more attention during the consent process to procedures requiring biological tests than to study design issues. Trust built between volunteers and the research team could enhance the successful conduct of clinical trials by allowing for informal discussions to identify and review volunteers' perceptions. These results point to the need for researchers to view informed consent as a process rather than an event

The relevance of timing of illness and death events in the household life cycle for coping outcomes in rural Uganda in the era of HIV.

INTRODUCTION: Predicting the household's ability to cope with adult illness and death can be complicated in low-income countries with high HIV prevalence and multiple other stressors and shocks. This study explored the link between stage of the household in the life cycle and the household's capacity to cope with illness and death of adults in rural Uganda. METHODS: Interviews focusing on life histories were combined with observations during monthly visits to 22 households throughout 2009, and recorded livelihood activities and responses to illness and death events. For the analysis, households were categorised into three life cycle stages ('Young', 'Middle-aged' and 'Old') and the ability to cope and adapt to recorded events of prolonged illness or death was assessed. RESULTS: In 16 of the 26 recorded events, a coping or struggling outcome was found to be related to household life cycle stage. 'Young' households usually had many dependants too young to contribute significantly to livelihoods, so were vulnerable to illness or death of the household head specifically. 'Middle-aged' households had adult children who participated in activities that contributed to livelihoods at home or sent remittances. More household members meant livelihood diversification, so these households usually coped best. Worst off were 'Old' households, where members were unable to work hard and often supported young grandchildren, while their adult children had stopped sending remittances as they had established households of their own. CONCLUSIONS: While households may adopt diverse coping mechanisms, the stage in the household life cycle when stressful events occur is important for coping outcomes. Households of the elderly and households with many young dependents are clearly vulnerable. These results demonstrate that household life cycle analysis can be useful in assessing ability to respond to stressors and shocks, including AIDS-related illness and death

Population based haematology reference ranges for old people in rural South-West Uganda

Background: Haematology reference values are needed to interpret haematology results and make clinical decisions, but these have not been established for old people in sub-Saharan Africa. The objective of this study was to establish haematology reference values for people aged 50 years and above in Uganda, to compare the haematology reference values for those aged 65 years and over with those less than 65 years and to compare these haematology reference values with established haematology reference values for old people from high income countries.  Methods: A total of 1449 people aged 50 years and above were recruited from the Medical Research Council/Uganda Virus Research Institute general population cohort between January 2012 and January 2013 (response rate 72.3 %). From the blood samples collected, we did haematology, HIV testing and malaria tests. We also obtained stool samples and tested them for hookworm infection. Questionnaire data were obtained through interviews. In the analysis, we excluded those with HIV infection, malaria infection, hookworm infection and those not feeling well at the time of recruitment. Medians and reference ranges for 12 haematology parameters were determined, based on the Clinical Laboratory and Standards institute's guidelines.  Results: In total, 903 people aged 50 years and above were included in the analysis with the majority 545 (60.3 %) being female. Men had significant difference in median haemoglobin, haematocrit, erythrocytes counts and white blood cells counts, which were higher than those of women. Women had significant difference in mean platelet counts and neutrophil percentages which were higher than those of men. Comparing those aged 65+ and those aged less than 65 years, the following parameters were significantly lower in those aged above 65 years: haemoglobin, haematocrit, erythrocytes counts, platelets and mean corpuscular volume. Compared to the reference intervals from old people in high income countries, all the haematology parameters from our study population were low.  Conclusion: The differences between haematology reference ranges in old people compared to adults and the very old (65+) compared to those between 50 and 65 call for more population based studies using nationwide surveys to be carried out among old people in other study settings in Uganda and the rest of Africa to explore the differences in haematology reference ranges between these different age groups with a view of establishing whether there is need to have separate reference range for these different categories of old people

Exploring people’s candidacy for mobile health–supported HIV testing and care services in rural Kwazulu-Natal, South Africa: qualitative study

BACKGROUND: The use of mobile communication technologies (mHealth: mobile health) in chronic disease management has grown significantly over the years. mHealth interventions have the potential to decentralize access to health care and make it convenient, particularly in resource-constrained settings. It is against this backdrop that we aimed to codevelop (with potential users) a new generation of mobile phone-connected HIV diagnostic tests and Web-based clinical care pathways needed for optimal delivery of decentralized HIV testing, prevention, and care in low- and middle-income countries. OBJECTIVE: The aim of this study was to understand ways in which an mHealth intervention could be developed to overcome barriers to existing HIV testing and care services and promote HIV self-testing and linkage to prevention and care in a poor, HIV hyperendemic community in rural KwaZulu-Natal, South Africa. METHODS: A total of 54 in-depth interviews and 9 focus group discussions were conducted with potential users (including health care providers) in 2 different communities. Theoretically informed by the candidacy framework, themes were identified from the interview transcripts, manually coded, and thematically analyzed. RESULTS: Participants reported barriers, such as fear of HIV identity, stigma, long waiting hours, clinic space, and health care workers' attitudes, as major impediments to effective uptake of HIV testing and care services. People continued to reassess their candidacy for HIV testing and care services on the basis of their experiences and how they or others were treated within the health systems. Despite the few concerns raised about new technology, mobile phone-linked HIV testing was broadly acceptable to potential users (particularly men and young people) and providers because of its privacy (individual control of HIV testing over health provider-initiated testing), convenience (individual time and place of choice for HIV testing versus clinic-based testing), and time saving. CONCLUSIONS: Mobile phone-connected HIV testing and Web-based clinical care and prevention pathways have the potential to support access to HIV prevention and care, particularly for young people and men. Although mHealth provides a way for individuals to test their candidacy for HIV services, the barriers that can make the service unattractive at the clinic level will also need to be addressed if potential demand is to turn into actual demand

ABC for people with HIV: responses to sexual behaviour recommendations among people receiving antiretroviral therapy in Jinja, Uganda.

People living with HIV who are taking antiretroviral therapy (ART) are increasingly involved in 'positive prevention' initiatives. These are generally oriented to promoting abstinence, 'being faithful' (partner reduction) and condom use (ABC). We conducted a longitudinal qualitative study with people living with HIV using ART, who were provided with adherence education and counselling support by a Ugandan non-governmental organisation, The AIDS Support Organisation (TASO). Forty people were selected sequentially as they started ART, stratified by sex, ART delivery mode (clinic- or home-based) and HIV progression stage (early or advanced) and interviewed at enrollment and at 3, 6, 18 and 30 months. At initiation of ART, participants agreed to follow TASO's positive-living recommendations. Initially poor health prevented sexual activity. As health improved, participants prioritised resuming economic production and support for their children. With further improvements, sexual desire resurfaced and people in relationships cemented these via sex. The findings highlight the limitations of HIV prevention based on medical care/personal counselling. As ART leads to health improvements, social norms, economic needs and sexual desires increasingly influence sexual behaviour. Positive prevention interventions need to seek to modify normative and economic influences on sexual behaviour, as well as to provide alternatives to condoms