Dissertations / Theses on the topic 'CARE-Uganda'

Background. This thesis evaluated the health care available and delivered to older persons (≥50years) at primary care facilities in Uganda in order to identify gaps and weaknesses and to suggest potential solutions for improving the quality of their care. Methods. The study was conducted in 48 primary care facilities across Uganda. It involved structured interviews with the persons in-charge of the facilities to determine what health care was provided at their facility; analysis of the numbers of outpatients attending the clinics to determine the absolute and relative caseloads due to older persons; structured interviews with health workers to determine their knowledge, attitudes and practices regarding the care of older persons; and structured exit interviews with older persons and younger adults (35-49 years) to determine their perceptions of the services they had received from the facility. Study participants were selected through a multistage stratified random sampling method designed to give a representative sample of Ugandan government primary care clinics and outpatients. Data were analysed using methods for complex multistage surveys. Findings. Availability of services: The study found important gaps and weaknesses in the availability of services, equipment and amenities that were considered to be particularly important for the care of older persons and that were enquired about in the study. Availability was particularly low for non-communicable diseases and at lower level (levels II and III) primary care facilities. Caseload: A total of 11,847 out of 140,338 total visits (8%) were made by older persons. Infectious illnesses (63%), as opposed to chronic non-communicable diseases (32%), were the most commonly diagnosed illnesses among the older persons. Knowledge, attitudes and practices of health workers: In total, 145 health workers (92% of target) were interviewed. Using predefined criteria, 32% of them were classified as having poor knowledge of geriatrics and 68% as having at least satisfactory knowledge. Most of them (97%) were classified as having neutral attitudes towards older persons. Although hardly any of them (0.6%) was classified as having bad practices overall; a substantial proportion reported not giving older persons and younger adults autonomy (46-49%), health education (15-35%), prompt attention (19-30%), and or screening for diseases that are common in older persons (14-17%). Perceptions of older persons and younger adults of the services they had received: In total, 244 older persons (96% of target) and 96 younger adults (100% of target) were interviewed. Although only 16-17% were classified as having received poor treatment overall, a substantial proportion reported not being screened for common diseases found in older persons (65-70%), receiving prompt attention (66-76%), having autonomy (70-80%), or receiving health education (30-39%). Only 1-2% perceived they had received poor service from the primary care facilities. Generally, older persons were not treated differently from younger adults (p=0.52) and their perceptions of the services were similar (p=0.21). Conclusion. There were important gaps and weaknesses in services important for the care of older persons, and in the knowledge, attitudes and practices of the health workers. The Ministry of Health should therefore investigate how they might improve services for older persons at all levels of primary care facilities.

This master’s thesis project began at the Karolinska University Hospital. This thesis discusses how to design an authorization schema focused on ensuring each patient’s data privacy within a hospital information system. It begins with an overview of the current problem, followed by a review of related work. The overall project’s goal is to create and evaluate an authorization schema that can ensure each patient’s data confidentiality. Authorization has currently become a very important aspect in information systems, to the point of being a necessity when implementing a complete system for managing access control in certain complex environments. This requirement lead to the approach that this master thesis takes for effectively reasoning about authorization requests in situations where a great number of parameters could affect the access control assessment. This study is part of the ICT4MPOWER project developed in Sweden by both public and private organizations with the objective of improving health-care aid in Uganda through the use of information and communication technologies.  More concretely, this work defines an authorization schema that can cope with the increasing needs of sophisticated access control methods where a complex environment exists and policies require certain flexibility.
Detta examensarbete projektet startade vid Karolinska Universitetssjukhuset. Denna avhandling diskuterar hur man designar ett tillstånd schema fokuserat på att säkerställa varje patients dataskydd inom ett sjukhus informationssystem. Det börjar med en översikt över det aktuella problemet, följt av en genomgång av arbete. Projektets övergripande mål är att skapa och utvärdera ett tillstånd schema som kan garantera varje patient data sekretess. Bemyndigande har för närvarande blivit en mycket viktig aspekt i informationssystem, till den grad att vara nödvändigt att genomföra komplett system för hantering av åtkomstkontroll i vissa komplexa miljöer. Detta är i själva verket den strategi som detta examensarbete tar för att effektivt resonemang om en ansökan om godkännande i situationer där ett stort antal parametrar kan påverka i åtkomstkontroll bedömningen. Denna studie är en del av ICT4MPOWER projektet utvecklades i Sverige av både offentliga och privata organisationer i syfte att förbättra stödet sjukvård i Uganda med användning av informations-och kommunikationsteknik.<p> Mer konkret definierar detta arbete ett tillstånd schema som kan hantera de ökande behoven av sofistikerade metoder för åtkomstkontroll där en komplex miljö finns och politik kräver en viss flexibilitet.

Decentralization of health services in Uganda, driven by the structural adjustment programme of the World Bank, was embraced by government as a means to change the health institutional structure and process delivery of health services in the country. Arising from the decentralization process, the transfer of power concerning functions from the top administrative hierachy in health service provision to lower levels, constitutes a major shift in management, philosophy, infrastructure development, communication as well as other functional roles by actors at various levels of health care. This study focused its investigation on ways and levels to which the process of decentralization of health service delivery has attained efficient and effective provision of health services. The study also examined the extent to which the shift of health service provision has influenced the role of local jurisdictions and communities. Challenges faced by local government leaders in planning and raising funds in response to decentralized health serdelivery were examined.

Maternal and child-health and health education are three major concerns of public health organisations and researchers throughout the world. Health education for mothers is a strategy many countries have adopted to improve maternal and child-health. The present study was carried out in Uganda with the objective of exploring the factors influencing the utilisation of postnatal services at Mulago and Mengo hospitals, a government and private hospital. Both hospitals are located in Kampala district in Uganda. The survey, was completed by 330 women who responded to a structured questionnaire that was given to them six to eight weeks after delivery. Questions that were asked generated demographic information about the mothers
mothers&rsquo
knowledge about postnatal services
mothers&rsquo
socio-economic status and barriers to utilisation of the postnatal services. The participants included all women who delivered in Mulago and Mengo hospitals in November 2003 except for those who had had a neonatal death. The data was analysed using descriptive and inferential statistics. Some of the key findings of the study were that most women lacked awareness about postnatal services and those who knew about these services only knew about immunisation and family planning services. The majority of the mothers did not know about other services, such as physiotherapy, counselling, growth monitoring, and physical examination. Lack of money for transport or service costs, distance from the health care facility, not being aware of the services, lack of somebody to take care of the child at home were some of the main barriers to utilisation of postnatal services. Others included, lack of education, lack of employment, lack of decision-making powers, and lack of time to go back for the service. The ministry of health should educate women and communities about the importance of postnatal care, its availability, and the importance of women having decision-making power over their own health. The health service organization should improve on the quality of care by ensuring that services are provided at convenient hours with privacy, confidentiality and respect and it should evaluate the services periodically from the users perspective to maintain the quality of service.

The research project intends to investigate the issue of health care accessibility with respect to financial obstacles focusing on the case study of Uganda, where impoverishing effects due to health services utilisation are critical for the population well-being. The thesis consists of three independent chapters aimed to examine multiple aspects which are relevant for health coverage and financial protection. In the first chapter, a political economy perspective is adopted to analyse the country experience of health financing reforms for Universal Health Coverage through a desk review and Key Informant Interviews. In the second chapter, household data from a rural district are employed to explore how the provision of social support through social networks operates at the behavioural level for overcoming barriers to health care utilisation and coping with financial hardship due to health expenditures. The analysis presented in the third chapter relies on a longitudinal household survey to assess the impact of a Community Health Financing pilot program on health expenditures and coping strategies. Overall, the thesis can contribute to the current debate on health coverage in Low- and Middle-Income Countries. On one side, the new evidence based on the collection of primary data and the adoption of innovative methodologies allows to advance the academic knowledge on financial protection. On the other side, the main research findings have the potential to inform policy design and policy making to effectively improve health coverage outcomes in informal settings.

The research project intends to investigate the issue of health care accessibility with respect to financial obstacles focusing on the case study of Uganda, where impoverishing effects due to health services utilisation are critical for the population well-being. The thesis consists of three independent chapters aimed to examine multiple aspects which are relevant for health coverage and financial protection. In the first chapter, a political economy perspective is adopted to analyse the country experience of health financing reforms for Universal Health Coverage through a desk review and Key Informant Interviews. In the second chapter, household data from a rural district are employed to explore how the provision of social support through social networks operates at the behavioural level for overcoming barriers to health care utilisation and coping with financial hardship due to health expenditures. The analysis presented in the third chapter relies on a longitudinal household survey to assess the impact of a Community Health Financing pilot program on health expenditures and coping strategies. Overall, the thesis can contribute to the current debate on health coverage in Low- and Middle-Income Countries. On one side, the new evidence based on the collection of primary data and the adoption of innovative methodologies allows to advance the academic knowledge on financial protection. On the other side, the main research findings have the potential to inform policy design and policy making to effectively improve health coverage outcomes in informal settings.

Bakgrund: Egenvård och utbildning i egenvård som omvårdnadsåtgärd är en viktig del i behandlingen av kroniskt sjuka patienter då det bidrar till att patienten blir delaktig i sin egen vård och hälsa samt att det kan förhindra försämring och komplikationer. Diabetes Mellitus typ II (DMT2) är en kronisk sjukdom där egenvård är central och kan göra skillnad för patientens hälsa. Kopplat till ökningen av DMT2 över hela världen, speciellt i låg- och medelinkomstländer, är sjuksköterskors arbete med egenvård och utbildning i egenvård av stor vikt. Få tidigare studier har fokuserat på hur sjuksköterskor i Uganda arbetar med egenvård inom DMT2. Syfte: Syftet med studien var att undersöka hur sjuksköterskor arbetar med egenvård och utbildning av egenvård som omvårdnadsåtgärd för att upprätthålla och förbättra hälsan hos patienter med diabetes typ II i Uganda. Metod: Deskriptiv kvalitativ design. Semi-strukturerade intervjuer hölls individuellt med sex sjuksköterskor på en endokrinologisk avdelning samt på en diabetesmottagning på ett sjukhus i Uganda. Huvudresultat: Intervjusvaren resulterade efter analys i tre kategorier och en underkategori; Patientundervisning, Klargöra patientens ansvar, Ta hänsyn till svårigheter samt underkategorin Identifiera behovet av ökad kunskap. Kategorin Patientundervisning beskriver hur sjuksköterskor arbetade med patientundervisning för att bibehålla och förbättra patientens hälsa och vilka huvudområden som ingick i undervisningen för att ge patienten möjligheter att uppnå egenvård. Under kategorin Klargöra patientens ansvar visas hur sjuksköterskor arbetar med patienternas förmåga att ta ansvar för genomförandet av egenvård. Kategorin Ta hänsyn till svårigheter beskriver vilka svårigheter som upplevdes avseende egenvård och utbildning av egenvård, samt hur sjuksköterskorna hanterade dessa. Slutsats: Sjuksköterskorna upplevde att arbetet med patientundervisning gav goda resultat och bättre hälsoförståelse hos patienterna, fortsatt patientutbildning för patienter med DMT2 i Uganda upplevs därför viktig. Sjuksköterskornas arbete med att klargöra patientens eget ansvar i arbetet med egenvård upplevs som viktigt för att behandlingen ska bli optimal och för att patientens hälsa på lång sikt ska kunna bibehållas och förbättras. De svårigheter som sjuksköterskorna upplevde och som de måste ta hänsyn till var komplexa och relaterade till så väl hälso- och sjukvårdssystemet liksom det omgivande samhället i Uganda.
Background: Self-care and education in self-care as a nursing action is an important part in the treatment of chronic diseases, since it involves the patients and increases the control of their own care and health. Diabetes Mellitus type II (DMT2) is a chronic disease where self-care is a central component in the care. One nursing responsibility is to educate the patient about self-care. DMT2 is increasing globally, specifically in low and middle-income countries, why nurses’ work with self-care and education of self-care as a nursing action in diabetes care is important. Few previous studies have focused on how nurses work with self-care of DMT2 in Uganda. Objective: The aim of the study was to explore how nurses work with self-care and education of self-care as a nursing action in order to maintain and improve the health of patients with diabetes type II in Uganda. Method: Descriptive qualitative design. Semi-structured interviews were held individually with six nurses working in an out-, or in-patient clinic on a hospital in Uganda. Results: Analysis of the interviews generated three categories and one sub category; Patient education, Emphasize patients’ responsibilities, Handle the difficulties and the sub-category Identify the need for increased knowledge. The category “Patient education” describes how the nurses worked with patient education in order to maintain and improve the patients’ health. The category “Emphasize patients’ responsibilities” describes how nurses work to strengthen the patients’ ability and their own responsibilities to maintain and improve their own health. The category “Handle the difficulties” describes the nurses’ experienced difficulties related to working with self-care and education about self-care. Conclusion: The nurses experienced that their work with patient education increased patients’ knowledge about diabetes and created a better understanding of the importance of self-care. Continuous patient education and the nurses’ work with emphasizing the patients’ responsibilities is experienced as important in order for the patients to maintain and improve in their health. The difficulties experienced by the nurses in this study were complex and are related to the health care system as well as the surrounding society in Uganda.

This thesis investigates the emergence of an internationally renowned psychiatric community in Uganda. Starting at the beginning of colonial rule in 1894, it traces the changing nature of mental health care both within and beyond the state, examining the conditions that allowed psychiatry to develop as a significant intellectual tradition in the years following Independence in 1962. This ‘golden age’ of psychiatry saw Uganda establish itself as a leader of mental health care in Africa, an aspect of history that is all the more marked for its contrast with the almost complete collapse of mental health care after the expulsion of the Asian population by Idi Amin in 1972. Using a wide range of new source material, including interviews with psychiatrists, traditional healers, and community elders, this thesis pushes the history of psychiatry in Africa beyond the examination of government policy and colonial hegemony. It brings together the history of psychiatry with the histories of missionary medicine, medical education, and international health by asking what types of people, institutions, and organisations were involved in the provision of mental health care; how important the growth of Makerere Medical School was for intellectual and institutional psychiatry; and how ‘African’ mental health care had become by the end of the period. It presents a history of mental health care in a country that has tended to be overshadowed by Kenya in the historiography, yet whose engagement with medical missionaries and efforts to advance medical training meant that the trajectory of psychiatry came to be quite different. Focusing in particular on the significance of western-trained Ugandan medical practitioners for mental health care, the thesis not only analyses African psychiatrists as historical actors in their own right, but represents the first attempt to examine the development of psychiatric education in Africa.

Introduction: Uganda is seen as a leading country in Africa regarding palliative care, but still far from all dying patients receive this specialized care. Many of them decease in non- palliative hospital wards, taken care of by nurses who do not have specialized education in palliative care. No research has been done in Uganda where these nurses’ experiences and perceptions of providing palliative care has been examined. Purpose: To describe the experiences and perceptions of providing palliative care among general nurses in a non-palliative medicine ward at Mulago hospital in Kampala, Uganda. Method: A qualitative method was used consisting of semi-structured interviews with seven general nurses working in a non-palliative medicine ward at Mulago Hospital in Kampala, Uganda. The participants were chosen through convenience sampling, and the data were analyzed by a qualitative content analysis. The results were discussed on the basis of the theoretical framework chosen for this study, the cognitive-motivational-relational theory of Lazarus. Results: In this study five categories were identified: providing palliative care by own preconditions, giving symptom relief, involving the relatives, informing and communicating and working in a team. The nurses were familiar with the concept of palliative care but their knowledge about it was limited, often perceiving it as mostly being about physical pain relief. The nurses showed a willingness to improve their work with end-of-life care, but problems like staff shortage and lack of knowledge were described as hindering. To communicate with the patients and their relatives was identified as the biggest challenge among the nurses. Conclusion:  The nurses experienced providing palliative care as difficult in many aspects such as communicating, symptom relief, teamwork and supporting relatives. They described the providing of palliative care as being emotionally challenging. Staff shortage and lack of knowledge and resources were perceived as hinders, preventing them from doing a good job. Overall the nurses wished more education in the subject, showing a willingness to improve their work with palliative patients.

Thesis (PhD)--Stellenbosch University, 2014.
ENGLISH ABSTRACT: The growing burden of mental illnesses in low- and middle-income countries, such as Uganda, necessitates effective interventions to promote mental and social well-being among their populations. Mood disorders contribute more substantially to the global burden of mental illnesses than do other forms of mental disorders. The substantial global burden of mental illnesses is projected to grow more rapidly in low- and middle-income countries than in high-income countries in the future. Because experiences of and responses to mood disorders are invariably patterned by social and cultural contexts, as argued in the growing field of cross-cultural psychiatry, health care systems, especially in low- and middle-income countries, need to design and deliver culturally relevant interventions that effectively deal with this problem. However, there is generally a paucity of suitable evidence to guide the planning and delivery of such interventions in countries like Uganda. As a response to the apparent knowledge and research gaps regarding experiences of mood disorders and care in Western Uganda, I conducted a qualitative study involving outpatients and their care providers, that is, outpatients’ families, psychiatric health workers, religious healers and traditional healers. Using purposive and snow ball sampling techniques, I selected participants, that is, outpatients as well as psychiatric health workers, outpatients’ families, religious healers and traditional healers involved in the care of the outpatients from the Mbarara Regional Referral Hospital (MRRH) and the “Greater Mbarara” region, respectively. The aim of this study is to explore explanatory models that outpatients and care providers in Western Uganda use in responding to mood disorders. I analysed the data collected in the fieldwork using ATLAS.ti 6.2, a computer-software programme designed to support qualitative data analysis. Results from the study indicate that outpatients and their care providers hold complex, diverse and contradictory explanatory models regarding mood disorders and care, which are shaped by their unique social and cultural contexts. Additionally, poor relationships and communication between patients and their care providers, especially between outpatients and psychiatric health workers, are strongly evident; structural barriers significantly hinder the provision and utilisation of care; care is generally inadequate, although it is conceptualised broadly to include biomedical, popular and folk treatments; and outpatients generally exhibit inconsequential (weak) agency in managing distress, which is primarily caused by mood disorders and care-seeking challenges. The results of the current study suggest several implications regarding mental health practice, training, policy and research.
AFRIKAANSE OPSOMMING: Weens die toenemende geestesiektelas in lae- en middelinkomstelande soos Uganda word intervensies vereis om die geestelike en maatskaplike welsyn van die bevolkings van daardie lande te bevorder. Gemoedsteurings maak ’n groter deel van die wêreldwye geestesiektelas uit as ander vorme van geestesongesteldheid. Die beduidende wêreldwye geestesiektelas sal in die toekoms na verwagting vinniger in lae- en middelinkomstelande as in hoë-inkomstelande toeneem. Aangesien ervarings van én reaksies op gemoedsteurings meestal deur maatskaplike en kulturele kontekste beïnvloed word, soos die groeiende dissipline van transkulturele psigiatrie beweer, moet gesondheidsorgstelsels, veral dié in lae- en middelinkomstelande, kultureel tersaaklike intervensies ontwerp en voorsien wat hierdie probleem doeltreffend hanteer. Tog is daar oor die algemeen ’n skaarste aan geskikte bewyse om die beplanning en voorsiening van sulke intervensies in lande soos Uganda te rig. In antwoord op die klaarblyklike kennis- en navorsingsleemtes met betrekking tot ervarings van gemoedsteurings en sorg in Wes-Uganda het ek ’n kwalitatiewe studie onder buitepasiënte en hul versorgers – met ander woorde hul familie, psigiatriese gesondheidswerkers, geloofsgenesers en tradisionele genesers – onderneem. Die steekproef het bestaan uit pasiënte en hul familielede, psigiatriese gesondheidswerkers sowel as geloofs- en tradisionele genesers wat gemoeid is met die versorging van buitepasiënte by die streeksverwysingshospitaal Mbarara (MRRH) én in die Mbarara-distrik onderskeidelik. Die doel met die studie was om te verken watter verklarende modelle pasiënte en versorgers in Wes-Uganda gebruik om op gemoedsteurings te reageer. Die data wat met die veldwerk ingesamel is, is ontleed met behulp van die rekenaarsagteware ATLAS.ti 6.2, wat ontwerp is om kwalitatiewe dataontleding te ondersteun. Die resultate van die studie toon dat buitepasiënte en hul versorgers oor komplekse, uiteenlopende en teenstellende verklarende modelle met betrekking tot gemoedsteurings en sorg beskik, wat deur hul unieke maatskaplike en kulturele kontekste gevorm word. My navorsing dui daarop dat swak verhoudings en kommunikasie tussen pasiënte en hul versorgers, veral tussen buitepasiënte en psigiatriese gesondheidswerkers, aan die orde van die dag is; dat strukturele versperrings die voorsiening en benutting van sorg beduidend verhinder; dat sorg oor die algemeen onvoldoende is, hoewel dit volgens die algemene begrip biomediese, populêre én volksbehandelings insluit, en dat buitepasiënte meestal ontoereikende (swak) vermoëns toon om nood wat uit gemoedsteurings en uitdagings in die soeke na sorg spruit, te hanteer. Die studie sit uiteindelik ook verskeie belangrike implikasies vir geestesgesondheidspraktyke, -opleiding, -beleid en -navorsing uiteen.

High maternal mortality rates throughout sub-Saharan Africa attest to the critical importance of comprehending barriers to health care during pregnancy and birth. This study examines how maternity care and birth are socially organized in Amuru sub-county, northern Uganda, a rural setting recovering from two decades of conflict. To conduct this study, I spent seven months undertaking fieldwork in Amuru, northern Uganda. In addition to observations, I interviewed and held focus groups with childbearing women, and in a second study stage spoke with health care providers and health care administrators. My research methods draw from institutional ethnography. The challenging context for maternity care and childbirth in Amuru was exacerbated by poor infrastructure and ongoing social distress in the aftermath of the protracted conflict between the Lord’s Resistance Army (LRA) and government forces that ended in 2006. Findings drawn from the data illustrated that approaches to care and birth among participants were shaped by everyday challenges associated with poverty and lack of infrastructure, the most prominent of which were accessing transportation, avoiding arduous physical work while pregnant, and ensuring adequate nutrition. Couples’ HIV testing, which was positioned as compulsory and wherein women were responsible for husbands’ participation, also challenged participants access to antenatal and delivery care. Childbearing women’s approaches to maternity care were also shaped by the mama kit project (distribution of a non-profit ‘gift’ of baby-care basics to mothers), and its associated discourses of deservingness, scarcity, and uncertainty. Imbued with power, all these factors affected access to care. This dissertation contributes to scholarship on the social constitution of maternity care and childbirth in northern Uganda.
Arts, Faculty of
Gender, Race, Sexuality and Social Justice, Institute for
Graduate

Background: After three decades, Human Immunodeficiency Virus (HIV) continues to pose significant threats globally. The efforts to curb the HIV epidemic have required investment in research, with clinical trials being a major focus, to develop HIV prevention, treatment, and cure interventions. A large portion of such research has been undertaken within low income settings, due to the high burden of HIV and the availability of willing volunteers within this setting. HIV research calls for the implementation of ethical research practice which is informed by policy guidelines. However, current policies are largely informed by inputs from high income countries, and lack the voices of those closely involved in research implementation. In order to contribute to ethics policy development in HIV research, it is essential to involve different stakeholders by exploring their experiences/views on the issue. Existing research in this field has mainly explored experience of recruitment and trial conduct, while very little has been done on trial closure, indicating a significant evidence gap worth exploring. This research therefore sought to illuminate, explore and understand the significant issues regarding the care of HIV positive drug trial participants during closure of HIV clinical trials, within a low income setting, specifically, Uganda. Study aim: The study aimed to explore how care is perceived and enacted in HIV drug trial closure in Uganda, by addressing the following specific objectives: 1. From the perspective of research participants and research staff, to explore the views, opinions and understandings of the ethical/legal/moral post-trial obligations in HIV drug trials. 2. From the perspective of research staff, to explore the experiences, practices and processes related to care for HIV drug post-trial participants in a low income setting. 3. From the perspective of research participants, to explore the experiences of care at trial closure. 4. From the perspective of research participants, to explore the experiences of transitioning from HIV research to care/community. Methodology: The study adopted an interpretive-constructivist approach, and employed a social constructivist grounded theory methodology. The study included a total of 21 trial participants and 22 research staff from three different HIV drug trials, in two Ugandan research institutions. In addition, relevant ethical documents were reviewed from two of the included trials. Data collection and analysis followed the principles of grounded theory, with data collection and preliminary analysis being undertaken concurrently, and earlier data informing subsequent data collection. Data collection strategies included individual interviews, focus group discussions, and key informant interviews. Data was collected over a period of 10 months, from October 2014 to August, 2015. NVivo10 software was used to manage the data. Ethical approval was received from the University of Nottingham UK and The AIDS Support Organization (TASO) Uganda, Research Ethics Committees (RECs). The study was registered with the Uganda National Council for Science and Technology (UNCST), as SS 3608. Permission to conduct the research was granted by the respective research institutions, and written informed consent was received from all respondents. Findings: The findings showed that trial closure was often stressful for HIV positive participants in Uganda, and often resulted in negative psychological, socio-economic and health impacts. The negative effects mainly resulted from being stopped from accessing research related health care, which was of a significantly higher quality, and the inability to find alternative care to match the research standards. The main concerns which arose during the transition process of participants from HIV drug trials to usual care facilities include: the loss of the quality care and valued relationships in research, the need to find and link to alternative care facilities, the need to meet the increased financial needs, and worries about the effects/outcomes of research participation. These concerns demanded a range of additional care and supportive strategies from researchers (and other stakeholders). A conceptual model, the model of ‘Facilitated Transition’ was developed, which summarises the findings of this research and provides a diagrammatic representation of the research findings, showing the links and relationships between the different elements. The research established that the transition of HIV positive trial participants from research to usual care facilities is a process, which appears to consist of three overlapping phases. These phases include: The pre-closure phase which represents events occurring before the actual trial closure but that underpin post-trial care, the trial closure phase which is the active phase of the closure, in which trial participants are prepared and exited from the trials, and the post-trial phase which represents the events occurring after trial participants have been linked to post-trial care facilities until 12 months later. These phases are demarcated by specific time points, which reflect how the transition process evolves, proceeds and concludes. At the various phases of the process, specific concerns (care needs) arise, being influenced by the participants’ previous care experiences and perceptions, plus their health and socio-economic positions. Specific actions are required to proactively facilitate trial participants during these phases. These actions are underpinned by the perceived ethical and moral responsibilities of the researchers, and are principally aimed at establishing a continuum of HIV care and treatment after trial closure, promoting positive care experiences for trial participants during the transition, and enabling the settlement and adaptation of trial participants to care in the public healthcare system. Conclusions: This is the first known study to investigate perspectives on post-trial care among HIV positive trial participants in a low income setting, from those closely engaged in the research process. This study has provided novel contributions in the area of HIV research ethics and post-trial care in general. The study has established that trial closure involving HIV positive participants raises significant ethical, moral and practical concerns in the Ugandan context. The findings further demonstrated that current post-trial care practice does not meet all the care needs of the HIV positive trial participants. Existing ethical recommendations on post-trial care place an emphasis on the need to ensure access to trial drugs and provision of trial results, where as less attention is given to other important aspects, as revealed in this research. To meet the post-trial care needs of HIV positive participants in Uganda, a comprehensive trial closure strategy is required. In addition to the already existing aspects of post-trial care, the new strategy should aim to: (i) address the financial needs of trial participants through financial assessment, support and empowerment, (ii) provide practical support during linkage to post-trial care, and (iii) offer post-trial follow-up to monitor and support the participants. Implementing these recommendations may require involvement of various stakeholders, including researchers, ethics authorities, research funders and donors, public healthcare workers, families, trial participants, and the community. Recommendations for future research: Further research is required to ascertain the rates of linkage to care, and to assess the health outcomes of post-trial participants following trial exit. In addition, a study to target the views of other stakeholders, such as the public healthcare facility workers, the family, and ethics authorities on post-trial care may be essential to understand better the ways in which to support HIV positive trial participants in Uganda. Furthermore, a longitudinal prospective study on a larger sample is required to test the model proposed in this research. And finally, there is need to deliberate more on the ethical and moral implications of financial benefits in HIV research involving HIV positive participants in a low income setting.

Bibliography: leaves 93-97.
While in sociology, choice and equity have always co-existed; this has not been a subject of attention in the health care market. Following promotion of the public- private mix in the health care sector, there have been concerns that the pursuit of efficiency might compromise equity in accessing health care services. The main concern for this study was that the resulting relative health care resources distribution following public-private interaction has equity implications at the household level. Kampala district in Uganda was used to investigate this concern. Data collected from a household survey, key informant interviews and secondary data on health care resources distribution, was analyzed using STATA statistical package. The study findings indicated that the private health care sector in Uganda has grown in size and that it caters for more people in Kampala district than the public health care sector. The findings further indicated that households use private services due to the perceived high quality of services, availability of drugs, availability of doctors and other health workers and the nearness of private providers. On the other hand, public health services where used or preferred was due primarily to availability of doctors. Other findings indicated that there was a relationship between provider choice/use and the distribution of health care resources particularly; health workers and health care facilities. This applied both at household level and geographically. Utilization of health services also varied with distribution of the same resources. Private provider use was not solely dependent on income and hence ability to pay, but on other factors related to service characteristics such as perceived quality. The findings further show that there are inequities in financing health care services with low-income groups paying relatively more than high- income groups. The study proposes to policy makers a monitoring mechanism of the variables and outcome measures, both at household and sectoral level, in order to minimize inequities in access to health care. The study also recommends that a comprehensive regulatory framework needs to be set up to promote and control the activities of the private health sector in Uganda.

Reports of people with mental disorders without access to treatment are a major occurrence in prisons outside and within Africa. An estimated 450 000 000 people worldwide suffer from mental or behavioural disorders. The disproportionately high rate of mental disorders in prisons is due to several factors. The factors include the widespread misconception that all persons with mental disorders are a danger to the public; the general intolerance of many societies to difficult or disturbing behaviour, the failure to promote treatment, care and rehabilitation, and above all the lack of or poor access to mental health services in many countries. Many of these disorders may be present before admission to prison and may be further exacerbated by the stress of imprisonment. However mental disorders may develop during imprisonment itself as a consequence of prevailing conditions.
Thesis (LLM (Human Rights and Democratisation in Africa)) -- University of Pretoria, 2011.
http://www.chr.up.ac.za/
nf2012
Centre for Human Rights
LLM

Background: Northern Uganda is recovering from a 23-year civil war that was largely confined to the region. During this period the rest of Uganda enjoyed a rapid GDP growth rate following wide-ranging macroeconomic reforms by the Ugandan government and its development partners. A post-recovery programme was implemented for Northern Uganda; however, the region still has the worst health status. This contributed to the country’s failure to attain MDG five for maternal health. Limited research has been conducted to determine which national and health system governance factors influence performance and affect access and utilisation of health care in countries like Uganda that have witnessed the dual context of conflict and non-conflict. A better understanding of the governance and policy development process in such settings is required if health policy adoption and implementation is to be more appropriate to the needs of the country’s entire population. Methods: A Political Economy Analysis framework was applied to compare governance factors at national and sub-national level in post-conflict Northern Uganda and in non-conflict East Central Uganda that had influenced the provision and utilisation of maternal health care. An analysis of constitutional, economic and health policies determined contextual factors, while data collected through in-depth interviews and focus group discussions with decision-makers, implementers and communities determined the institutional and agency features. The features were used to access power and accountability relationships and incentives that drove the actions of health system stakeholders in central government, health ministry, district local government and civil society as well as in the local communities during the post conflict period in the Northern and East Central Uganda. Findings: The post-conflict period in Northern Uganda coincided with evidence of increased national political commitment to addressing the healthcare needs of Northern Uganda. However, the President, International Funding Institutions and Finance Ministry technocrats who were the dominant governance stakeholders pursued an approach to economic development that prioritised funding for the development of energy, transportation and defence sectors over that for healthcare. Women parliamentarians emerged as maternal healthcare policy champions but played a limited role in highlighting the special health needs of Northern Uganda. The Health Ministry lacked the political and technical capacity to adapt and implement maternal health care policies to specific sub-national needs. NGOs focused on human rights advocacy in Northern Uganda that enhanced the community’s demand for appropriate healthcare while in East Central Uganda they mainly addressed supply-side issues. Political patronage at national and sub-national levels negatively influenced supply and demand for healthcare. In Northern Uganda donor funding, district-based development partner presence, and CSO health system demand-side activities moderated a more positive influence. Conclusion: Decentralisation offers greater opportunities for health system recovery in settings of confined conflict but is prone to elite capture and corruption in peaceful settings within the same national context. Women leaders are critical in the development of a national health system where there is confined conflict, but political and traditional norms limit their role in the promotion of universal healthcare coverage. Despite the presence of factors that portended better maternal healthcare in the post-conflict setting, the limited involvement of the health ministry in the recovery process diminished the impact. CSOs in collaboration with communities play an important role in enhancing the responsiveness of the health system but are prone to political intrusion. The comprehension of policies, economic processes and social institutions of a country recovering from confined conflict enables the identification of variables which, if addressed, will lead to versatile, equitable health systems for all citizens.

Background Uganda lacks formal emergency care training programs to address its high burden of acute illness and injury. The Ugandan Ministry of Health (MoH) rolled out the World Health Organization’s (WHO) Basic Emergency Care (BEC) course, the first openaccess short course to provide comprehensive basic emergency training for health workers in low-resource settings. The BEC and its new online cases both require further evaluation. Aim and Objectives The study aimed to assess the BEC course and online cases’ impact with the following objectives: 1. Determine participants’ knowledge acquisition and self-efficacy in emergency care. 2. Evaluate BEC participants’ perceptions of the course and online cases. 3. Assess the online cases’ impact on participants’ knowledge and self-efficacy in emergency care. Methods Mixed methods design explored the BEC’s impact. MCQs and Likert scales assessed knowledge and self-efficacy, respectively, among 137 participants pre-BEC, post-BEC and six-months post-BEC using mixed model analysis of variance (ANOVA). FGDs assessed perceptions of the course and online cases post-BEC and six-months postBEC among 74 participants using thematic content analysis. Results Participants gained and maintained significant increases in MCQ averages and Likert scores. The pre-course cases group scored significantly higher on the pre-test MCQ than controls (p=0.004) and found cases most useful pre-BEC. Nurses experienced more significant initial gains and long-term decays in MCQ and self-rated knowledge than doctors (p=0.009, p< 0.05). Providers valued the ABCDE approach and reported improved emergency care management post-BEC. Resource constraints, untrained colleagues and knowledge decay limited the course’s utility. Conclusions Basic emergency care courses for low-resource settings can increase frontline providers’ long-term knowledge and self-efficacy in emergency care. Nurses experience greater initial gains and long-term losses in knowledge than doctors. Online adjuncts can enhance health professional education in LMICs. Future efforts should focus on increasing trainings and determining the need for re-training.

This study about preschool education and care in four preschools, in Uganda, used a mixed-methods approach and a multiple-case study design. It investigated the preschools’ qualities, the resources available, the organisation, characteristics in regard to children with special educational needs and the preschools’ strengths, challenges and improvement needs. Bronfenbrenner’s bioecological theory and the PPCT-model was used as theoretical framework in this study. The study was conducted at four preschools in Uganda, one in a high-income area, one in a low-income area, one in a special needs centre and one in a refugee camp. Data collection was conducted during 3-5 days at each preschool and included structured observations using the Early Childhood Environment Rating Scale®, Third Edition, open observations and interviews. The result depicted substantial differences among the preschools in all aspects investigated. The interviewed teacher in the high-income area considered they had the resources they needed, whilst the interviewed teachers in the refugee camp considered the limited resources being a challenge with 150 children in one class and no access to water during the time of observation. The education had an emphasis on teacher directed education in all preschools, where the teacher led the activities and chose the content. There was an uncertainty among the teachers about which child they should deem in need of special educational support. The support provided in the preschools varied, depending on the need the teachers perceived the children to have and the resources available. The overall quality in the preschool in the high-income area was found to be reasonably good in the ECERS-3 rating (score 4.40), but the rest of the preschools scored below minimum quality. Challenges to the preschools were limited resources, methods of caregiving and discipline, and educational practices based on teacher directed education.

Background. Unsafe abortions are a prominent problem in low and middle income countries. These unsafe abortions can be prevented by decreasing unintended pregnancy. Few adolescents in Uganda use contraception methods even though knowledge of various contraceptives are almost universal among women. Problems adolescents face are often multidimensional and require solutions as such. Health care providers’ perspective of these problems can be the difference for an adolescent to use or not use family planning services. Purpose. The aim of this study was to describe health care providers’ experiences and prospects of providing family planning to adolescents in Kampala, Uganda. Method. A semi-structured interview guide was used for face-to-face interviews. Eight participants from four organisations in Kampala, Uganda were interviewed. Qualitative content analysis method was used and the results were presented descriptively. Main results. The main result showed that the health care providers expressed that there is great importance to discuss and eradicate the myths and misconceptions the adolescents have regarding different family planning methods by sensitising with factual information, preferably in early ages. Some of the solutions to reach out as early as possible was to involve parents, social media and reproductive health-education in schools. The result presented an extensive description of their current methods in counseling and ways to reach adolescents, insight to various obstacles and ways to improve the pressing situation in Kampala, Uganda. Conclusion. The interviews aimed to explore health care providers’ experience of methods used for family planning to adolescents in Kampala, Uganda. The health care providers were aware of obstacles and potential improvements to develop their business further. To meet young people on their own conditions and to be adaptable was discussed as important for a successful family planning.
Bakgrund. Osäkra aborter är ett allvarligt problem i låg- och medelinkomstländer. Dessa aborter kan undvikas genom att minska oplanerade graviditeter. Få ungdomar i Uganda använder preventivmedel trots kunskapen om flera preventivmedel är nästan universell hos kvinnor. Problem ungdomar möter är multidimensionella och kräver liknande lösningar. Rådgivarens perspektiv på dessa problem kan vara avgörande för en ungdom att använda eller att inte använda preventivmedel. Syfte. Syftet med studien var att undersöka hälso- sjukvårdspersonalens erfarenhet och förhoppning av att erhålla familjeplanering till ungdomar i Kampala, Uganda. Metod. En semi-strukturerad intervjuguide användes för att utföra individuella intervjuer. Åtta deltagare från fyra organisationer i Kampala, Uganda, intervjuades. Kvalitativ innehållsanalys användes och resultatet presenterades deskriptivt. Resultat. Resultatet visade att hälso- sjukvårdsarbetarna uttryckte att det är väldigt viktigt att diskutera och förgöra de myter och missförstånd ungdomarna har angående olika preventivmedel genom att göra ungdomarna medvetna om vad som är fakta, gärna tidigt i åldrarna. Några av lösningarna att nå ut tidigast möjligt var att involvera föräldrar, sociala medier och utbildning om reproduktivhälsa i skolor. Resultatet visar en omfattande beskrivning av nuvarande metoder i rådgivning och sätt att nå ut till ungdomar, insikt i flera hinder och förslag på sätt att förbättra den pressade situationen i Kampala, Uganda. Slutsats. Intervjuernas mål var att undersöka hälso- sjukvårdspersonalens erfarenhet av metoder använda till familjeplanering till ungdomar i Kampala, Uganda. Hälso- sjukvårdspersonalen var medvetna om hinder och potentiella förbättringsarbeten som kan utveckla deras verksamhet ytterligare. Att möta ungdomarna på deras egna villkor och att vara anpassningsbar diskuterades som viktigt för en framgångsrik familjeplanering.

Palliativ vård – vård i livets slutskede – är inte prioriterat i tredje världen. I Uganda grundades 1993 Hospice Africa Uganda (HAU), ett hospice som var tänkt som modell för andra afrikanska länder. Här utbildas bl a sjuksköterskor som har rätt att skriva ut morfin och andra läkemedel efter en nio månader lång kurs. I den här etnografiska fältstudien används observationer, intervjuer och gruppintervjuer för att undersöka sjuksköterskan roll inom palliativ vård i Uganda. I studien deltar sammanlagt 20 sjuksköterskor som jobbar på HAU, Mulago hospital och studenter i palliativ vård-kursen på HAU. Resultatet visar att sjuksköterskanS roll är mångfacetterad. Utöver förskrivning av läkemedel är deras roll att utföra vården holistisk, där de tar hänsyn till fysisk, psykosocial och andlig smärta. I sitt arbete möter de många utmaningar men de har även möjlighet att förbättra patientens livskvalitet.
Palliative care – end of life care – is not a priority in developing countries. In 1993 Hospice Africa Uganda (HAU) was founded and chosen as a model for other african counties. Among other things nurses are authorised to prescribe morphine and other palliative care drugs after undergoing a nine months clinical palliative care course at HAU. In this ethnographic field study observations, interviews and group interviews are used in order to explore the role of the palliative care nurse specialist in Uganda. In total there are 20 participants involved in this study, who are working at HAU, Mulago hospital and students from the clinical palliative care course. The result of the study reveal that the role of the palliative care nurse specialist is multifaceted. Beyond prescribing drugs their role is to deliver holistic care by taking into consideration the physical, psychosocial and spiritual pain patients and their family can have. They encounter many challenges in their work but they also have the possibility to improve the quality of the patients life.

Background:  Village health workers (VHWs) in 5 villages in Bugoye subcounty (Kasese District, Uganda) provide integrated community case management (iCCM) services, in which VHWs evaluate and treat malaria, pneumonia, and diarrhea in children under 5 years of age. VHWs use a “Sick Child Job Aid” that guides them through the evaluation and treatment of these illnesses. Malaria is diagnosed by rapid diagnostic test, pneumonia by age-based respiratory rate cutoffs, and diarrhea by symptoms as described by the caregiver. Objectives:  Measure the quality of iCCM services over time using routinely collected iCCM program data. Methods: We used existing aggregate program data to: 1) summarize the patient population and services provided, and 2) measure quality of care based on concordance between matching categories or actions in the treatment algorithm. We then employed lot quality assurance sampling to create a patient-level dataset, and created a secondary patient-level dataset of all patients with “danger signs” (evidence of severe illness). Using patient-level records, we: 1) describe adherence to the iCCM algorithm; 2) measure VHW-level quality using lot quality assurance sampling decision rules; 3) assess change over time in quality of care with generalized estimating equations regression modeling. Results:  Most VHWs achieved greater than 90% concordance for all measures apart from concordance between number of patients presenting with fever and number of rapid diagnostic tests performed. From the main patient-level dataset, 97% (150) of patients with diarrhea were treated with oral rehydration and zinc, 95% (216) of patients with presumed pneumonia were treated with amoxicillin, and 94% (240) of patients with malaria were treated with artemisin combination therapy or rectal artesunate. However, only 44% (44) of patients with a negative rapid test for malaria were appropriately referred. Of patients with danger signs, 95% were appropriately referred to a health facility. Overall, 75% (434) of patients received all the correct evaluation and management steps. At the VHW level, 9 out of 23 VHWs have provided high-quality care over 2 years, based on the selected lot quality assurance sampling decision threshold (21 out of 25 patients with correct management). Quality of care increased significantly in the first 6 months after initiation of iCCM services (p = 0.003), and then plateaued in months 7-24. Conclusions: Quality of care was high for uncomplicated malaria, pneumonia and diarrhea. Overall quality of care was lower, partly because VHWs often did not follow the guidelines to refer patients who tested negative for malaria. Quality of care appears to improve as VHWs gain initial experience in iCCM care. Despite some limitations, lot quality assurance sampling and concordance are feasible and scalable approaches to measuring quality of iCCM care.

The importance of Early Childhood Care and Education (ECCE) as a prerequisite for national development has been emphasized in recent years by developing countries and by donor agencies. Research findings point to the benefits children, as well as nations, derive from ECCE provision. For children, these benefits include school readiness; and for nations, benefits address the reduction of social inequality, possibilities for increased tax revenue through eventual improved employment prospects, and development of societal values. In 1990 at Jomtien in Thailand, 155 nations of the world agreed on a joint plan of action to fulfill six Education For All goals. The first goal required nations to work towards the expansion and improvement of comprehensive ECCE by the year 2015. The responsibility of poor countries was to make necessary budget allocations and policy commitments; rich countries were to provide both intellectual and financial support. Whilst some progress has been made, many developing countries especially in Sub-Saharan Africa are still at risk of not achieving EFA by 2015. Uganda is one country where there are difficulties in attaining EFA and ECCE in particular. This has been exacerbated by the prevailing economic, social, geographical, and cultural differences, as well as general beliefs about ECCE. This study investigates the present quality and accessibility in ECCE provision in Uganda. It explores the extent to which Uganda has expanded and improved ECCE and raises the key question as to why even with international donor support and government commitment to institutional changes, ECCE is an area of education still riven with problems. The study uses participant observation, semi-structured interviews, and photography in six selected schools in three Districts. Research findings reveal that the majority of children are not accessing ECCE provision, while many of those that do are being educated in environments not conducive to their learning and development. Findings show that there are a number of factors both internal and external to Uganda that impact upon efforts to fulfil the commitment made at Jomtien in 1990. This research concludes that first and foremost, there should be a national, ‘Ugandan’ approach to and policies about ECCE. Rather than being led by international pressure and policies, approaches to improving quality and accessibility in ECCE provision should be refocused away from ‘top-heavy’, ‘lop-sided’ approaches to a more pre-school-level focused approach. This will help in establishing and addressing culturally relevant and economically achievable quality targets. Secondly, there is need for public awareness of the importance of ECCE. This will not only give rise to increased community participation in the establishment of community-based ECCE centres, but also the involvement of stakeholders in the identification and implementation of solutions to the problems facing ECCE. And finally, rather than looking to the West for funding, Uganda should develop in-country funding strategies from both public and private sources. This will help to remove the negative impact of ‘modalities’, these often being required by external donor funding. In-country funding sources will as a result give Uganda room to ‘manoeuvre’ when planning for ECCE.

This thesis is an examination of health care provision in Uganda by means of a case study in Kamuli District. In Uganda, the response to political and economic breakdown in the 1970s has been the spontaneous, decentralised emergence of a pluralist, but fragmented system made up of public, private and voluntary sector providers. While theorists and policy-makers previously placed almost exclusive emphasis on state health care provision, they now favour a system of institutional pluralism. This approach attempts to use the particular advantages attributed to each type of provider to meet diverse needs and conditions. The thesis undertakes a comparative performance analysis of each sector in relation to access, efficient use of resources and quality of care to determine each provider's relative strengths. While the public sector performs worst, the other two sectors also suffer from performance gaps. An institutional analysis is used to explain the differences in (mal-)performance. First, the thesis assesses the intraorganisational institutional mechanisms of each provider type and their ability of ensuring accountability, financial responsibility and appropriate staff incentives. Secondly, it examines the nature of interorganisational interactions and the effectiveness of the governance mechanisms for the co-ordination and regulation of the system as a whole and illuminates how these affect organisational performance. The study demonstrates that the intraorganisational institutional set-up, the governance mechanisms and the interorganisational interactions are characterised by a lack of accountability and therefore are constantly distorted through the operation of perversive incentives. These institutionalised pathologies, especially in the public sector, affect performance negatively. It is argued that a system characterised by institutional pluralism is superior. However, to benefit from its full potential and to heal organisations and put them in a position to heal, it is necessary to manage the intraorganisational and interorganisational dimensions simultaneously and to strengthen accountability mechanisms and the actors' capacities and willingness to co-operate.

Includes abstract.
Includes bibliographical references (p. 219-239).
This study investigated the viability of community health insurance (CHI) as a means of increasing access to health care for rural households in Uganda. This was against the background that health care is a basic need and right and that, despite this, households especially in the rural parts of Uganda are still lacking effective access to health care. The study is informed by different theories of justice in health care delivery, namely, the libertarian, egalitarian and utilitarian theories. It also borrows concepts from Andersen's (1968) behavioural model of health services access and utilization as well as Kutzin's (2001) framework for analysis of health financing arrangements to assess the viability of CHI as a strategy to increase access to health care.

Background: Road traffic accidents are on the rise in low income countries and have a large socioeconomic impact on Uganda. In Uganda, the nurse-patient ratio is 50-100 patients per nurse which is higher than in Sweden, and the patients’ next-of-kin are involved to assist with nursing care. Victims of road traffic accidents demand a lot of nursing care but contextual limitations give patients different opportunities for recovery. A common nursing language, as NANDA and NIC, aim to make communication more efficient; ease work for the staff and make the care better for the patients. Setting: The study was conducted at Mulago Hospital in Kampala, Uganda. Method: Participant observation was used when observing the nursing care of 24 patients. Field notes were analyzed using manifest content analysis. Aim: The aim of this study was to identify the nursing panorama of patients with musculoskeletal injuries in their context. Result: The ratio between the ten most common diagnosis and interventions showed to be 222:59. The diagnostic span and the range of interventions varied according to if staff or next-of-kin performed the nursing of the patients. Conclusion: Using NANDA and NIC, revealed the next-of-kin in the study being responsible for nursing diagnoses and interventions.

This licentiate thesis presents the use of participatory approach to developing a data warehouse for data mining in health care. Uganda is one of the countries that faced the largest brunt of the HIV/AIDS epidemic at its inception in the early 1980s with reports of close to a million deaths. Government and nongovernmental interventions over the years saw massive reductions in HIV prevalence rates over the years. This reduction in HIV prevalence rates led to great praises by the international community and a call for other countries to model Uganda’s approach to battling the epidemic. In the last decade the reduction in HIV prevalence rates have stagnated and in some cases increased. This has lead to a call for reexamination of the HIV/AIDS fight with an emphasis on collective efforts of all approaches. One of these collective efforts is the introduction of antiretroviral therapy (ART) for those already infected with the virus. Antiretroviral therapy has numerous challenges in Uganda not least of which is the cost of the therapy especially on a developing country with limited resources. It is estimated that of the close to 1 million infected in Uganda only 300,000 are on antiretroviral therapy (UNAIDS, 2009). Additional challenges of the therapy includes following through a treatment regimen that is prescribed. Given the costs of the therapy and the limited number of people able to access the therapy it is imperative that this effort be as effective as possible. This research hinges on using data mining techniques with monitoring HIV patient’s therapy, most specifically their adherence to ART medication. This is crucial given that failure to adhere to therapy means treatment failure, virus mutation and huge losses in terms of costs incurred in administering the therapy to the patients. A system was developed to monitor patient adherence to therapy, by using a participatory approach of gathering system specification and testing to ensure acceptance of the system by the stakeholders. Due to the cost implications of over the shelf software the development of the system was implemented using open source software with limited license costs. These can be implemented in resource constrained settings in Uganda and elsewhere to assist in monitoring patients in HIV therapy. A algorithm that is used to analyze the patient data warehouses for information on and quickly assists therapists in identifying potential risks such as non-adherence and treatment failure. Open source dimensional modeling tools power architect and DB designer were used to model the data warehouse using open source MYSQL database. The thesis is organized in three parts with the first part presenting the background information, the problem, justification, objectives of the research and a justification for the use of participatory methodology. The second part presents the papers, on which this research is based and the final part contains the summary discussions, conclusions and areas for future research. The research is sponsored by SIDA under the collaboration between Makerere University and Blekinge Institute of Technology (BTH) in Sweden.

Magister Public Health - MPH (Public Health)
The World Health Organization recommends focused antenatal care (FANC) to limit the number of times a pregnant woman makes visits to the health facility (if there is no other need) to four while ensuring that she receives a set of evidence-based interventions at each of the visits to achieve healthy outcomes for the mother and baby. Uganda adopted the FANC approach in 2003 across the health care system although reports indicate that only 48% of pregnant women make at least four visits during the course of their pregnancy and the quality of antenatal care (ANC) services needs improvement. This study investigated FANC implementation and related influencing factors as perceived by the health workers across the health system in Jinja district.

Background: Although antiretroviral treatment is expanding in sub-Saharan Africa, the World Health Organization advocates for integration of palliative care with HAAR T because pain, other distressing symptoms and complex psychosocial challenges persist throughout the HIV trajectory. Palliative care improves the outcome for patients with HIV and may complement antiretroviral treatment by increasing adherence through better management of side effects from the treatment, providing patient and family-centred holistic care, and giving end-of-life care when necessary. However, integrating what have become two disciplines is challenging. Aim: To study the implications for palliative care provision in the context of changing policy to universal access to HAART for people living with advanced AIDS (PLWA) in Uganda. Research questions addressed in the study included: 1. How do patients with advanced AIDS (stage III and IV) and with palliative care needs and their families experience care delivery and receipt over a period of 8 weeks? 2. How is the morphine roll-out programme among advanced AIDS patients operationalized in Uganda? 3. What are the challenges faced by health care workers involved in delivery and implementation of integrated palliative care for patients with advanced AIDS? 4. What are the views of key opinion leaders on development of palliative care policies in Uganda? Methods: A mixed methods approach was employed. The study comprised of three phases. In phase one, a consecutive sample of 30 newly enrolled patients advanced AIDS (stage III & IV) and their carers were recruited at Hospice Africa Uganda and followed up for 8 weeks. Qualitative interviews were conducted with patients and their carers at one time point and an outcome measure using African Palliative Care Association-Palliative Outcome Scale (APCA-POS) was used to assess changes in their experiences over 8 weeks, following access to palliative care. In phase two, 10 palliative care staff members participated in individual interviews and one focus group to explore the challenges they faced in delivering services to patients. Phase three explored, by the use of interviews with 7 key stakeholders, the broader context of palliative care policy development and opinions about key priorities for the future. Findings: Out of 30 patients, 14 were male and 16 were female. They ranged in age from 18-60 years. The majority of patients were bed-ridden and experienced distressing symptoms related to advanced AIDS and AIDS-defining cancers which necessitated timely palliative care intervention. The key findings of the study relate to the range of physical symptoms experienced by patients and the psychosocial challenges of disclosure and stigma encountered by patients and their families against a backdrop of profound poverty. Palliative care staff indicated two categories which broadly covered the challenges of palliative care delivery to PLWA in Uganda: service-linked and provider-linked challenges. Palliative health care staff and key stakeholders identified strategies to respond to palliative care needs for PLWA across four dimensions: a) partnerships or networking together with stakeholders; b) improving palliative care education; c) raising awareness of palliative care among communities and health care workers; d) advocacy and policies which support and strengthen initiation and expansion of palliative care services to PLWA, including the availability of morphine. Conclusion: The study shows the paramount importance of drawing on patients' and carers' experiences and concerns to shape models of African palliative care. Both palliative care staff and key informants' perspectives highlight successes, barriers and important lessons for palliative care service delivery in Uganda. These lessons have several implications across the dimensions of practice, education, policy and research. Palliative care staff need to work with several key players or stakeholders to address the many psychosocial issues affecting PLWA including support during treatment. The study indicates the need to translate government policies on palliative care into action.

The dissertation consists of four separate studies that have focused on different aspects of the relationship between the management of sports related injuries and utilisation of best practices before sports, during sports and after sports-related injuries. Background: Participation in sports has an associated risk of injury which is defined by the type of sport and level of participation. Any injury affects the athletes‘ health status. To mitigate this risk, international sporting organizations provide guidelines, and mandates the proper evaluation and care for athletes before, during and after training or participation in competition. Despite the availability of guidelines describing best medical care practices for managing athletes, inappropriate management practices are reported globally. The barriers to best medical practice vary. While these barriers have been investigated in a variety of sports in developed countries, similar investigations have not been extensively conducted in developing countries, where the demands are different. Therefore, the overall aim of this thesis was to explore barriers to best medical practices in a variety of sports in Uganda. Methodology: The research was conducted as four studies. The first study used a descriptive case study approach. The data were collected on a sample of injured athletes (n=75) from four sports in Uganda (football/soccer, athletics, basketball and rugby) to describe the medical care practices of the sports resource providers. The current prevention, emergency care, intermediate treatment, rehabilitation services and return-to-sports strategies were all documented in a period of six months. The gaps in best practices were observed, and further investigated in the next three studies. Firstly, a validated questionnaire was used to establish the level of knowledge and practices of various components/themes of athletes‘ well-being and best practices among the stakeholders. Secondly, the current standards of the sports arenas and medical and high-performance facilities were examined using a validated checklist. The last study was a semi-structured interview which assessed the available national health care policies to support sports best practice strategies in Uganda Findings: The overall results of the first study showed there was a significant lack of compliance to best medical care practices in all the phases of athletes‘ health care. The barriers to best practice were confirmed as: (i) the lack of adequate knowledge and awareness on various best practice strategies, (ii) the sports and health facilities were below the required standards and, (iii) there were no national health sports care policies to support and facilitate the implementation of best practices in Uganda. Conclusion: (i) A holistic approach may be required to address the best medical care practice barriers in Uganda to improve on the health and safety of athletes. (ii) The knowledge of stakeholders should be improved and awareness created about best medical practices in sports in Uganda. (iii) There is a critical need to develop a national sports health care policy. (iv) The facilities for sports and health care of athletes urgently need improvement and supported.

Uganda currently hosts 1.4 million refugees and conflict-affected people. Known as the “best place” in Africa to be a refugee, Uganda’s policies encourage self-sufficiency and local integration. However, many refugees, particularly women and girls, face persistent challenges. Understanding the reproductive health needs of this population and exploring the accessibility of services for conflict-affected populations in this low-income host country is a priority. This multi-methods study aimed to assess the reproductive health needs of displaced Congolese women in camp- and urban-based settings in Uganda. We interviewed key informants, facilitated focus group discussions with refugee women, and conducted in-depth interviews with Congolese women of reproductive age to better understand knowledge, attitudes, practices, and services. Our results suggest that Congolese refugees have significant unmet reproductive health needs. Maternal health and delivery care is characterized by insufficient human resources, inconsistent medication availability, discrimination, bribery, and communications challenges. The availability of contraceptive products, including emergency contraception, is limited in camp-based settings due to supply-chain management challenges and theft by staff; lack of contraceptive knowledge among Congolese refugees shapes use. Finally, the legal restrictions on abortion lead to unsafe practices among refugees and pose a barrier to the provision of post-abortion care. This study provides insight for opportunities to improve the delivery of sexual and reproductive health services to refugees in Uganda to ensure that the infrastructure and processes align with national policies and international guidelines.

Background: Home-based HIV counselling and testing (HBHCT) is highly acceptable and may be an effective strategy for HIV prevention and population-based test-and-treat programmes in sub-Saharan Africa (SSA). However, few data are available on linkage to care or on the effectiveness of strategies to increase linkage to care among HIVpositive persons identified through HBHCT in SSA. The aims of this PhD were to (i) systematically review the literature on linkage to care among HIV-positive adults diagnosed through HBHCT in SSA; and (ii) to conduct a cluster-randomised controlled trial to measure the effectiveness of a counselling intervention after HIV diagnosis through HBHCT in increasing linkage to care in rural Masaka district, Uganda. Methods: (i) Five databases (Medline, Embase, Global Health, Web of Science, and Africa-Wide information) were systematically searched for studies published between 1st January 2000 and 19th August 2016. Authors of studies for which some required information was missing were requested to provide additional data. (ii) For the trial, 28 rural communities were randomly allocated (1:1) to the intervention (HBHCT, referral, and brief home-based counselling sessions one and two months after HBHCT) or control group (HBHCT and referral only). HIV-positive adults (≥18 years) not yet in care were enrolled. Primary outcomes were linkage (registration with an HIV clinic) at 6 months after HBHCT, and time to linkage. Analyses were by intention-to-treat using random effects logistic regression and Cox regression with shared frailty. Results: (i) 19 eligible studies were identified; one had all the required data. Additional data were obtained for 13 studies; thus, 14 studies were included in the review. Linkage to care was generally lower ( < 33%) if HBHCT was followed by referral only, and higher ( > 80%) if some strategy was used to facilitate uptake of referral. Only one study was a randomised trial and most were susceptible to outcome ascertainment bias. (ii) In the trial, 551 individuals tested HIV-positive; 205 (37.2%) were already in care and thus ineligible. 302 (87.3% of those eligible) were enrolled (intervention, n=149). Retention was similar across trial arms (92% overall). Overall linkage to care was 42.1%. Counselling was associated with a 2.18-fold [95% confidence interval (CI)=1.26-3.78] increase in the odds of linkage. There was no evidence of a difference between arms in the rate of linkage in the first two months, but subsequently the rate of linkage was higher in the intervention arm (hazard ratio=4.87, 95% CI=1.79-13.27). Conclusion: Counselling substantially increases linkage to care among HIV-positive adults identified through HBHCT and can increase antiretroviral therapy coverage in SSA.

Effective Health Systems make service provision easy for health workers, especially if they have access to the latest guidelines in a dynamic profession where new technologies are ever emerging. However, available data indicates that the health system in Uganda is constrained and still using old technologies despite the availability of newer technologies. As a result, this study sought to investigate the adoptability, cost effectiveness, and sustainability with regard to Personal Digital Assistants. The study, which was cross sectional in nature, was carried out in Mbale District in Eastern Uganda between 2008 and 2010. In depth interviews were conducted with health workers and key informants. Also, published and unpublished literature about theUganda Health Information Network was reviewed.The findings revealed that the use of Personal Digital Assistants also known as handheld computers can go a long way towards improving healthcare delivery in countryside health facilities. To health workers in remote places, the PDAs are a source of the latest clinical care guidelines for several diseases including HIV and AIDS as well as malaria. Health information systems have been improved and data collection and reporting have been eased by this technology. However, while evidence of viability of this technology exists, it still has challenges like power and delays in software updates among others.

Thesis: M.C.P., Massachusetts Institute of Technology, Department of Urban Studies and Planning, September, 2020
Cataloged from student-submitted PDF of thesis.
Includes bibliographical references (pages 31-34).
A qualitative study was conducted from September 2019 to December 2019 to understand how an agricultural microfinance intervention targeting women in southwest Uganda impacted social support networks. We interviewed 30 women after their participation in an intervention that supplied them with materials to begin a poultry business with no interest loans. Specifically, this study sought to describe how relationships between project implementers and participants in the intervention developed into both formal and informal networks of social support. Social support emerged in the form of friendship, counseling, access to markets, financial support and through relationships based in trust. These findings help describe the care work that is produced outside of international development projects that may have implications for scale up.
by Bridget Burns.
M.C.P.
M.C.P. Massachusetts Institute of Technology, Department of Urban Studies and Planning

It has been estimated that one third of the world's population does not have access to "adequate" health care. Some 1.6 billion people live in countries experiencing "concentrated" acquired immune deficiency syndrome (AIDS) epidemics. Many countries in Africa--and other low-income countries--are in dire need of help providing adequate health care services to their citizens. They require more hands-on care from Western health workers--and training so more African health workers can eventually care for their own citizens. But these countries also need assistance acquiring and implementing both texts--the body of medical information potentially available to them--and technology--the means by which that information can be conveyed. This dissertation looks at these issues and others from a multi-faceted approach. It combines a survey of the developers of Web sites designed for use by health workers in low-income countries and a proposal for a novel approach to communication theory, which could help improve health communication and other social marketing practices. It also includes an extensive review of literature regarding a number of topics related to these issues. To improve healthcare services in low-income countries, several things should occur. First, more health workers--and others--could visit African countries and other places to provide free, hands-on medical care, as this researcher's group did in Uganda. Such trips are ideal occasions for studying the cultural differences between "mzungu" (white man) and the Ugandan people. A number of useful medical texts have been written for health workers in low-income countries. Others will be published as new health information becomes available. But on what medium will they be published? Computers? Personal digital assistants? During the past 10 years the Internet became an ideal venue for conveying information. Unfortunately, people in target countries such as Uganda encounter cultural differences when such new technologies are diffused. This dissertation looks at cultural and technological difficulties encountered by people in low-income countries who attempt to diffuse information and communication technologies (ICT). Once a technology has been successfully adopted, someone will look for ways to use it to help others. There are hundreds of sites on the Internet--built by Web developers in Western countries--that are designed for use by health workers in low-income countries. However, these Web developers also experience cultural and technological differences, based on their knowledge of and attitudes toward best practices in their field. This research includes a survey of Web developers which determined their attitudes toward best practices in their field and tested this researcher's hypothesis that there is no significant difference among the developers' attitudes toward the content on their sites, their audience's cultural needs and the various technological needs their audience has. It was found that the Web developers agree with 17 of 18 perceived best practices and that there is a significant difference between Web developers' attitudes toward their audience's technological needs and their attitudes toward quality content and the audience's cultural needs. Creation of the survey herein resulted in this researcher generating a new way of thinking about communication theory--called digital research cycles. The survey was based on a review of literature and is rooted in the belief that any successful communication of a computer-mediated message in the information age is a behavior which is influenced by the senders' and receivers' attitudes and knowledge about textual style, the audience, technology and the subject matter to which the message pertains.
Ph.D.
Department of English
Arts and Humanities
Texts and Technology PhD

This is a study of the experiences and perspectives of the users and providers of primary health care. The study analyses the users and the providers' experiences and perspectives with regards to the decentralization policy and its impact on the quality of primary health care delivery in the rural district of Pallisa in Uganda since its implementation in 1990s-2005. This is mainly a qualitative study in which both users and providers were interviewed although quantitative data was applied to add meaning where necessary. The study has shown that decentralization in Uganda is a new form and means of service delivery. The planners aim at getting every segment of the population to participate in all aspects of service delivery. There is evidence to show that the policy has had a positive impact on the structure of the health sector as a whole. However, the systematic processes of cost containment measures has resulted in the general economic hardship in the operationalization of the decentralization policy in Uganda and has resulted in varied experiences and the way decentralization is viewed in Pallisa. The study noted that hardships have resulted from increasing responsibilities given to lower level of government amidst declining state support in terms of funding and manpower development. The study notes that the apparent changes brought by the overall restructuring of health services have resulted in the 'commercialization of social relations which has changed the way people live and view public goods which also contributes to hardships in service utilization. This study shows that although health service delivery and its quality in rural Pallisa is an old problem, there are feelings among the users and providers that these problems have worsened in the recent past transforming health care consumers and providers into a new category of social actors who have taken different approaches to survive a midst poverty, exclusion and the declining state support system. Although this study does not recommend a return to a centralization system of service delivery in the health sector, it does however, find implementation problems which will have to be addressed if the intended benefits are to be realized.

Purpose The aim of this study was to audit the knowledge and practices regarding eye care and eye complications of diabetes mellitus (DM) among diabetic patients 18 years and above in Kampala, Uganda. Methods. A cross-sectional study was done to collect data on the demographics, level of awareness and practices of the 409 diabetic patients regarding eye care and eye complications of DM. Data collected was captured in EPIDATA version 3.1, exported to STATA version 15.0 for further management and analysis. Participants characteristics were summarized using summary statistics and graphs. Using a standard questionnaire, scores for knowledge and practice for diabetes; knowledge and practice on diabetic retinopathy were generated and in all the four scores aforesaid, participants were classified as having good or poor knowledge and practice1. Proportions of participants demonstrating good awareness and good practice were reported. Fishers and Pearson chi- square tests were used to test for associations between patient’s characteristics and knowledge and practice on DM. Bivariable and logistic regression analysis was performed and variables with a p-value of < 0.2 of the unadjusted odds ratio were further analyzed at multivariate logistic regression analysis to find out factors that significantly predict patient’s knowledge and practice on diabetes mellitus. Results. A total of 409 participants were interviewed in the study, majority were females 293 (71.6%) and mean age (SD) was 50 (12) years. A high proportion of participants 314 (76.9%) was aware that DM could affect the eyes but only 24 (5.9%) stated diabetic retinopathy as an eye complication in diabetic patients. Good knowledge about diabetes mellitus was demonstrated by 178 (43.5%) of the study participants. However, only 33.3% had good knowledge on eye care and diabetic retinopathy. It was determined that female diabetic patients and those who stayed with DM for 10 years and beyond were less likely to have good practice on DM compared to male patients and those who had been with DM for less than five years (OR, 95% CI: 0.58, 0.36-0.95, P=0.029: OR, 95% CI: 0.53, 0.32-0.87, P=0.011). It was also found that diabetic patients with good knowledge of DM were at least three times more likely to have good practice compared to those with the poor knowledge (OR, 95% CI: 3.2, 2.1 -4.8, P <0.001). Conclusion Lack of knowledge regarding the importance and need for periodic eye check-up for diabetic retinopathy was a significant finding in his study. Good knowledge on diabetes, gender and duration of DM had significant association with the patients practice patterns.

This thesis is about the Tukula Fenna Project (TFP) that was set up at the Home Care Department of St. Raphael of St Francis Hospital (Nsambya Hospital) in Kampala, Uganda. In 2003, Associazione Casa Accoglienza alla vita “Padre Angelo” (ACAVPA) or “HOUSE FOR LIFE, Father Angelo” and other Italian partners; in particular, PENTA Foundation and University of Padova, Department of paediatrics collectively signed a memorandum of understanding (MoU) with Nsambya Hospital. The aim of the MoU was to collaborate with the hospital in the fight against HIV particularly in children and adolescents, orphans and vulnerable children (OVC) and their families in Kampala and three surrounding districts (Mukono, Wakiso and Mpigi). Thus, the MoU officially established the children’s HIV programme at Nsambya Hospital, Home Care Department in 2003. The programme was then called the “PCP Project” because the initial intervention was among other things, providing Cotrimoxazole prophylaxis against Pneumocystis Carinii pneumonia (PCP, also known as Jiroveci Pneumonia). As more resources including provision of antiretroviral drugs (ARVs) from external sources and expertise became available over the years, the project evolved into a full-blown HIV programme for infants, children and adolescents as well as their families and caretakers. Additionally, the name “PCP”, was replaced by “Tukula Fenna”, which means “growing up together” in the local language (Luganda). The project was implemented at the Home Care Department within an existing community home-based care (CHBC) model that evolved in response to the HIV epidemic in Uganda, and other high-burden resource-limited settings. The TFP provides comprehensive HIV care, treatment and psychosocial support services (PSS) and apart from operating at the Home Care department of Nsambya Hospital, it also operates at Ggaba Parish Outreach Clinic and 3 other outreach clinics in and around Kampala. This thesis describes the research outcomes of the project that was managed by Dr. Massavon from 2008 to 2013. It reviews the published literature from the key milestones of the HIV epidemic to the post-conflict health reforms in Uganda and their relevance to current health outcomes, the national AIDS response and health systems strengthening. The literature review also examines the human resources for health (HRH) crisis and task shifting in the scaling up of ART in high-burden resource-limited settings. In addition, the review looks at the evolution of complementary HIV service delivery models like community and home-based care as a spontaneous response to the HIV epidemic in many resource-limited settings including Uganda. Finally, the literature documents that, there are relatively few paediatric HIV services in the country, leading to poor geographical access and a low antiretroviral therapy (ART) coverage for children and that, HIV-infected children and in particular, AIDS orphans are an underserved and an understudied population. At the time of this thesis, approximately 2,100 infants, children and adolescents had been enrolled into care in the TFP; about 1140 were active in care, and about 60% were on ART. Approximately, 47% of children and adolescents in the project are orphans. This thesis therefore aims at contributing to improving paediatric HIV management through operational research in the context of a CHBC model in Kampala, Uganda. The findings cover key outcomes such as retention in care, attrition and loss to follow up (LTFU), treatment failure, mortality on antiretroviral therapy (ART) and operationalization of dried blood spots (DBS) for viral load testing among HIV-infected children. The thesis also included a specific study on HIV-Epstein-Barr Virus (EBV) co infections in children and adolescents, considered relevant to the project setting. Except for study 5 (EBV study) which was a cross-sectional study, the studies were generally retrospective cohort studies conducted at the Home Care Department of Nsambya Hospital in Kampala, Uganda. The methodology of the operational research was based on an implementation schema derived from the ART guidelines of the WHO and Uganda (Figure 17). The selection of the outcomes for the operational research was based on the rationale that, they have direct bearings on implementation and potentially could improve the same. The findings and implications from the six studies that constitute the chapters of the thesis are summarized as follows: Study 1: This retrospective observational study compared HIV and TB outcomes from adults and children in the Nsambya CHBC with national averages from 2007-2011. The core findings show that Nsambya CHBC activities enhance and complement national HIV and TB management, and resulted in better outcomes when compared to the national averages. This approach may hold the potential for chronic disease management in resource-limited settings. Scaling up CHBC could have wider positive impacts on the management of not only HIV and TB, but also other chronic diseases as well as the general health system. A long-standing “faith-based solidarity” among international donors and partners has been pivotal to the survival and evolution of the Nsambya CHBC. Study 2: This is a retrospective cohort analysis of attrition and LTFU and their predictors among children and adolescents aged 0-20 years. Over the study period, 5.34% (62) of patients died, 37.61% (437) were LTFU, and thus overall attrition was 42.94% (499). Generally, attrition and LTFU were relatively high among children and adolescents in the TFP. Not receiving ART was the single factor significantly associated with attrition in the cohort, while both baseline BMI z-scores and receipt of ART were protective against LTFU among HIV positive children and adolescents. Efforts should be made to initiate ART among all paediatric patients as soon as possible, and to provide aggressive follow-up for those not yet receiving ART. Orphans need more nutritional support to reduce the burden of malnutrition and improved access to early ART, which could also promote growth responses in this vulnerable and understudied group. Study 3: This retrospective cohort study reviewed records from HIV positive children age 0 to 18 years engaged in a CHBC and a Facility-based, family-centred approach (FBFCA) from 2003 to 2010 focussing on retention in care, loss to follow-up, mortality, use of ART, and clinical characteristics. Irrespective of model of care, children receiving ART had better retention in care and therefore long-term survival. Encouragingly, if children were on ART, then their survival was as good, if not slightly better, in the CHBC compared to the FBFCA. Based on our observations, substantial improvement in child survival can be achieved in either a community-based or a family-care model as long as HIV- infected children are identified early and begun on ART. To ensure this occurs, early identification of HIV infected children requires strong linkages of pregnant HIV- infected women to prevention of mother to child transmission (PMTCT) services; active tracking to ensure all HIV exposed infants receive Polymerase Chain Reaction-based early infant diagnosis. Additionally, rapid early initiation of ART among HIV infected infants and children are essential. Study 4: This is an observational study that included HIV-infected children attending the Beira Central Hospital (Mozambique) and the Nsambya Hospital, Home Care Department (Uganda), and evaluated clinical and immunological failure according to the WHO 2006 guidelines. Two hundred and eighteen of 740 children with at least 24 weeks follow-up experienced treatment failure ((29% 95%CI (26-33)), with crude incidence of 20.0 events per 100 person-years (95%CI 17.5-22.9). Having tuberculosis co-infection or WHO stage 4, or starting a non-triple cART significantly increased the risk of failure. Drug toxicity (18.3%), drug availability (17.3%) and anti-tuberculosis drug interactions (52, 25.7%) were the main reported reasons while only 9 (4%) patients switched cART for clinical or immunological failure. Considerable delay in switching to second line cART may occur despite an observed high rate of treatment failure. Our findings reinforce the need for simplification of more effective clinical and immunological criteria for prompt recognition of cART treatment failure. Children presenting with advanced disease and TB co-infection should be targeted for closer and more sensitive monitoring of treatment response. This should be matched with a constant provision of appropriate antiretroviral drugs with optimization of first line drugs and treatment sequencing. Supply of new paediatric formulations for second line regimens and drug optimization should be considered as critical milestones to allow scaling up of early cART and reduction of treatment failure in children. Study 5: In this cross-sectional study, dried blood spot (DBS) samples from 213 HIV-1 infected children were collected and EBV DNA was extracted and analysed for quantification of EBV types 1 and 2 and for quantification of 16S ribosomial DNA (16S rDNA), a marker of microbial translocation. Ninety-two of 140(66%) children on ART and 57 of 73(78%) ART-naive children had detectable EBV levels. Co-infection with both EBV types was significantly less frequent in ART-treated than in ART-naïve children (OR=0.54, 95%CI 0.30;0.98, p=0.042). HIV-1 inducing microbial translocation and a state of persistent immune activation, may lead to EBV replication and expansion of EBV-infected B-cells, thus increasing the EBV-DNA load. Super-infection by both types of EBV in HIV-1 infected subjects may represent an additional risk for the onset of EBV-related malignancies. ART, by limiting HIV-1 replication, microbial translocation and related immune activation, may prevent super-infection by both EBV types and keep EBV viremia down, thus reducing the risk of EBV-associated lymphomas. Study 6: This was a retrospective study to evaluate viral load (VL) using DBS and to explore the accuracy of clinical and immunological criteria for treatment failure (TF) in a cohort of HIV-1-infected children. In this cohort, immunological and clinical criteria as per WHO 2010 guidelines poorly predicted the presence of a viral load greater than either 1000 cp/ml or 5000 cp/ml (whole blood) from DBS. The low sensitivity and positive predictive values for immunological and/or clinical failure confirm those reported by the literature. This finding further supports the WHO recommendations that VL monitoring should be implemented and used to identify cases of treatment failure earlier. Policy implications of key findings of thesis Scaling up CHBC could have wider positive impacts on the management of not only HIV and TB, but also other chronic diseases as well as the general health system. In this thesis, and in line with the literature, Early ART initiation was associated with improved survival and retention in both community-based and facility-based approaches. ART is potentially protective against EBV-related lymphoproliferative disorders in HIV-EBV co infected children. This calls for early ART initiation and close monitoring in such children. Operationalization of the use of DBS in viral load monitoring in HIV-infected children in low and middle-income countries is feasible and should be encouraged to improve the quality of paediatric HIV management in such settings. The low ART coverage among children calls for urgent, greater and more effective decentralization of paediatric ART services within primary health care services at the district and sub-district levels in the general health system in Uganda. Children presenting with advanced HIV disease and TB co-infection should be targeted for closer and more sensitive monitoring of treatment response. Orphans need more nutritional support to reduce the burden of malnutrition and improved access to early ART, which in turn could promote growth responses in this vulnerable and understudied group
Questa tesi descrive il Progetto Fenna Tukula (TFP) in corso presso il Home Care Department dell'Ospedale St. Raphael e St. Francis (Nsambya Hospital) a Kampala (Uganda). Nel 2003, l'Associazione Casa Accoglienza alla Vita "Padre Angelo" (ACAVPA) insieme ad altri Partner (in particolare la Fondazione PENTA e l'Università di Padova), hanno firmato una lettera di intenti con il Nsambya Hospital. L'obiettivo di questo documento era di collaborare con l'ospedale nella lotta all'AIDS nei bambini ed adolescenti, orfani (OVC) e le loro famiglie a Kampala e nei distretti circostanti di Mukono, Wakiso e Mpigi. Il progetto è stato chiamato inizialmente "PCP project" in quanto l'intervento consisteva essenzialmente nella profilassi con il Cotrimoxazole per la prevenzione della polmonite da Pneumocystis Carinii (conosciuta anche come Jiroveci Pneumonia). Dopo due anni dall’inizio del progetto grazie ad una aumentata disponibilita’ di risorse e’ stato possibile fornire ai bambini che ne avevano necessita’ la terapia con farmaci antiretrovirali (ARVs) da e quindi il progetto si e’ inidirizzato verso un programma 'tout-court' di lotta all'AIDS pediatrico con un approccio globale, che includeva anche le famiglie e non solamente i bambini. Di conseguenza, il nome "PCP" è stato rimpiazzato da "Tukula Fenna", che significa "crescere insieme" nella lingua locale (luganda). Il progetto si e’ caratterizzato con l’implementazione di un modello di cure domiciliari (CHBC) adattato alla realta’ dell’ Uganda andando quindi oltre i confini dello NHC fino a comprendere delle strutture periferiche tra cui la Clinica della Parrocchia di Ggaba ed altre 3 cliniche nei dintorni di Kampala. Questa tesi descrive i risultati dell’ attivita’ di ricerca svolta nell’ ambito del progetto che è stato coordinato dal Dr. Massavon tra il 2008 e il 2013. La tesi si articola in una prima parte di revisione della letteratura con particolare riferimento alla realta’ ugandese sia da un punto di vista dell’ epidemiologia dell’ HIV che dell’ organizzazione sanitaria nel paese con particolare riferimento all'evoluzione dei modelli sanitari finalizzati alla lotta all'AIDS, come modelli di cura comunitaria o domiciliari. L’ analisi della letteratura ha documentato che, in Uganda vi sono relativamente pochi servizi specialistici sull’ HIV pediatrico. Tale aspetto ha come conseguenza una disparita’ tra le varie regioni del paese e un limitato accesso alla terapia antiretrovirale per i bambini soprattutto coloro che sono senza genitori naturali. A dicembre 2013 circa 2.100 bambini ed adolescenti sono stati arruolati nel TFP. 1.140 sono seguiti regolarmente e il 60% di loro sono in terapia con ART. Il 47% dei bambini è orfano. La finalita’ ultima della tesi e’ quello di contribuire al miglioramento delle cure nei bambini HIV positivi in Uganda attraverso la valutazione di un modello di assistenza domiciliare. In quest’ ottica l’ attivita’ di ricerca si e’ articolata nella valutazione delle caratteristiche dei pazienti persi al follow-up, dell’ outcome della terapia antiretrovirale e, in un ambito piu’ prettamente clinico, nello studio dell’ impatto della infezione da EBV sulla progressione della malattia da HIV. L’ attivita’ si e’ sviluppata attorno diverse linee di ricerca i cui risultati sono stati pubblicati (o in corso di pubblicazione) nei lavori i cui elementi fondamentali sono riassunti di seguito: Studio 1: Studio osservazionale retrospettivo che analizza i risultati del follow-up dei pazienti con HIV e TB (adulti e bambini) seguiti presso lo Nsambya Hospital confrontandoli con i dati nazionali tra il 2007 e il 2011. I risultati mostrano che il modello seguito allo Nsambya ha prodotto migliori risultati in termini di morbilita’ e mortalita’ rispetto alle medie nazionali. Il modello descritto basato sull’ assistenza domiciliare potrebbe essere utilizzato anche in altri contesti nei paesi in via di sviluppo. Studio 2: Analisi di coorte retrospettiva per la valutazione delle caratteristiche dei pazienti persi al follow up (LTFU) e dei fattori di rischio associati, nei bambini ed adolescenti tra 0 e 20 anni. Nel corso del periodo di follow up considerato, il 5,3% dei pazienti è deceduto, il 37,6% e’ stato perso al follow-up con un “attritio” globale del 42,9%. In generale, LTFU sono stati relativamente alti tra i bambini e gli adolescenti nel TFP. La terapia con ARV e la crescita regolare sono stati fattori associati con la permanenza in follow up e con la sopravvivenza. Tali osservazioni suggeriscono come gli sforzi dovrebbero essere indirizzati ad iniziare la ART nei pazienti pediatrici il prima possibile, e a fornire un follow-up regolare a coloro che non sono ancora in terapia. Particolare attenzione va data agli orfani che necessitano di un supporto alimentare particolarmente attento e di un follow up regolare per definire il momento migliore quando iniziare la ART. Studio 3: Studio di coorte retrospettivo che ha studiato i bambini HIV positivi tra 0 e 18 anni inseriti in un programma di assistenza domiciliare con un approccio centrato sulla famiglia (FBFCA) dal 2003 al 2010, focalizzandosi sulla perdita al follow-up, la mortalità, l'uso di ART e le caratteristiche cliniche. A prescindere dal modello di cura, i bambini che ricevevano l'ART sono seguiti piu’ regolarmente e di conseguenza hanno una sopravvivenza a lungo termine maggiore. Basandosi sulle nostre osservazioni, un miglioramento sostanziale nella sopravvivenza dei bambini può essere raggiunto sia con un modello basato sulla assistenza domiciliare che sul coinvolgimento attivo della comunita’. Studio 4: Studio osservazionale prospettico che ha incluso bambini HIV positivi assistiti presso il Beira Central Hospital, in Mozambico e lo Nsambya Hospital, che ha valutato il rischio di fallimento immunologico e clinico secondo le linee guida del WHO del 2006. 218 su 740 bambini con almeno 24 settimane di follow-up ha avuto un fallimento della terapia ((29% 95% CI (26-33)), con una incidenza di 20.0 eventi su 100 anni-persona (95%CI 17.5-22.9). La coinfezione con la TB, la presenza di AIDS (WHO stadio 4), o l’inizio della ART con uno o due farmaci aumenta significativamente il rischio di fallimento terapeutico. Un ritardo considerevole nel passaggio alla seconda linea di cART si e’ osservato nonostante un alto tasso di fallimento terapeutico. Tali osservazioni sottolineano ancora una volta l’importanza di garantire un efficace monitoraggio clinico e immunolgico per poter modificare la terapia prima che insorgano ceppi virali resistenti. Insieme alla necessita’ di un corretto monitoraggio va sottolineata l’importanza di garantire una fornitura di farmaco regolare senza interruzioni e le formulazioni pediatriche per i bambini piu’ piccoli Studio 5: Studio trasversale, effettuato su campioni raccolti in cartoncini assorbenti (DBS) prelevati da 243 bambini affetti da HIV-1 da cui e’ stato estratto il DNA del EBV per analisi e quantificazione dei tipi 1 e 2, e per la quantificazione di 16s DNA ribosomiale (16S rDNA), un marker di traslocazione microbica. 92 su 140 (66%) dei bambini in terapia con ART e 57 su 73 (78%) di bambini non trattati sono risultati positivi all’ EBV. La coinfezione con entrambi i tipi di EBV è stata significativamente meno frequente in coloro in terapia con ART (OR=0.54, 95%CI 0.30; 0.98, p=0.042). Tale osservazione e’ compatibile con il fatto che ' HIV-1, che induce una traslocazione microbica e uno stato di persistente attivazione immunitaria, può portare a una replicazione di EBV ed ad una espansione di cellule B infette, aumentando di conseguenza il DNA dell'EBV. La co-infezione da EBV in soggetti affetti da HIV-1 può rappresentare un rischio addizionale per lo scatenarsi di tumori (linfomi) associati al EBV. Il trattamento con ART, riducendo la replicazione dell’ HIV-1, la traslocazione microbica e la relativa attivazione immunitaria, può prevenire la super infezione da EBV e mantenere la viremia EBV bassa, riducendo il rischio di linfomi ad esso associata. Studio 6: Studio retrospettivo per valutare la carica virale dell’HIV (VL) su campioni raccolti in DBS e per esplorare l'accuratezza dei criteri clinici ed immunologici per la definizione del fallimento terapeutico. La bassa sensibilità e valore predittivo del fallimento clinico e/o immunologico, da noi osservate, confermano quanto riportato in letteratura. Questa osservazione supporta ulteriormente la raccomandazione del WHO che il monitoraggio della carica virale debba essere implementato ed utilizzato per identificare precocemente casi di fallimento del trattamento. Implicazioni dei risultati della tesi e messaggi chiave Il modello assistenziale centrato sull’ assistenza domiciliare e’ risultato molto efficace per ridurre il rischio di perdita al follow up. Tale modello potrebbe quindi essere considerato anche per l’assistenza dei malati di TB o con altre malattie croniche. Le nostre osservazioni supportano quanto gia’ riportato in letteratura che l’inizio precoce dell’ ART e’ era associato non solo aduna migliore sopravvivenza ma anche ad un minor rischio di perdita al follow up. Il trattamento ART è potenzialmente protettivo contro patologie linfoproliferative correlate al EBV nei bambini con coinfezione da HIV ed EBV. L’uso del DBS per il monitoraggio della carica virale nei bambini HIV positivi si e’ rivelato fattibile sia da un punto di vista organizzativo che della qualita’ dei campioni da testare. Tale metodica dovrebbe quindi essere incoraggiata per migliorare la qualità della gestione pediatrica dell'HIV soprattutto nei paesi in via di sviluppo La bassa copertura di ART tra i bambini richiede un urgente, maggiore e più efficace decentramento dei servizi pediatrici centrali e la loro integrazione con i servizi sanitari di base a livello distrettuale e sub-distrettuale in Uganda. I bambini che presentino uno stadio avanzato di infezione HIV e coinfezione da TB dovrebbero essere sottoposti a monitoraggio più serrato per iniziare il trattamento ART appena cio’ si renda necessario. Gli orfani necessitano un particolare attenzione sia per quanto riguarda il supporto nutrizionale che il monitoraggio clinico e immunologico necessario per iniziare correttamente la ART.

INTRODUCTION Moderate and severe acute malnutrition estimates among children in the West Nile region, in Uganda, are higher than the national level (10.4% and 5.6%, respectively versus 3.6 % and 1.3 %). Additionally, the WHO estimates that in 2016, 6.6 million children and young adolescents died from causes attributed to the poor quality of care in such similar settings. Supportive supervision (SS) has been proposed as one of the approaches to improve quality of care. The main objectives of this project were; to determine the baseline status of the quality of care of nutrition services and health outcomes among malnourished children at health facility level; to test the effectiveness of supportive supervision to improve health outcomes and quality of care; and to estimate its cost effectiveness. METHODS Phase one: Six health centers with the highest burden of malnutrition in Arua district, West Nile region, were selected. Information on health outcomes (cured, defaulters, non responders, transferred and died) and quality of case management were extracted from official records. Quality of care was assessed using the national Nutrition Service Delivery Assessment (NSDA) tool, with ten key areas scored as poor, fair, good or excellent. Phase two: The six facilities were randomized to receive either SS or to control. SS was delivered for ten months in two equal five months’ periods; to heath center (HC) staff only (first period), and later extended to community health workers (CHWs) (second period). SS was delivered biweekly for the first three months and later monthly. The package included: monitoring progress, provision of technical support, facilitating good team dynamics and problem solving attitude. The control facilities were assigned to receive the national routine quarterly supervisory visits. Main outcomes included health outcomes, quality of case management, quality of nutrition service delivery and access to care. Phase three: The Incremental Cost Effectiveness Ratios (ICER) for the first and second period were estimated. RESULTS Phase one: A total of 1020 children were assessed at baseline. The cured and defaulter’s rates were 52.9% (95% CI: 49.7 – 56.1) and 38.3% (95%CI: 35.2 – 41.4) respectively. The NSDA revealed 33/60 (55%) areas scored poorly, 25/60 (41%) as fair, 2/60 (3.3%) were good and none were excellent. Main gaps included: lack of trained staff; disorganized patient flow; poor case management; stock out of essential nutrition supplies and weak community linkage. Phase two: 737 children were enrolled, 430 in the intervention and 307 in the control. Significant findings of the intervention versus control included: higher cure rate [83.8% (95%CI: 79.4 – 86.7) versus [44.9% (95%CI: 37.8 – 49.1), p=0.010)], lower defaulting rate [1.4% (95%CI 1.1% to 1.8%) versus 47.2% (95%CI 37.3% to 57.1 %), p=0.001], higher correct complementary treatment (94.0% versus 58.8%, p=0.001) and more NSDA areas scored as either good or excellent [24/30 (80%) versus 14/30 (46.6%), OR = 4.6 (1.3 – 17.4), p=0.007]. Access to care was significantly higher during the second period as compared to the first period [proportion difference = 28.4%, OR = 1.7 (1.3 – 2.3), p = 0.001].Phase three: the ICER of € 9.7 (95%CI:7.4 – 14.9) and € 6.8 (95% CI:4.8 – 9.5) were estimated in the first and second periods respectively. CONCLUSION At baseline, the quality of care provided to children with malnutrition at health center level was greatly substandard. The delivery of SS to HC staff and CHWs significantly improved the cure rate, the quality of case management, the overall quality of care and access to care. SS, especially that delivered to CHWs, was very cost effective.