The Development of a Decision Aid for Patients with Ulcerative Colitis Deciding Between Ileostomy or Ileal Anal-Pouch Reconstruction

Objectives: To develop a prototype decision aid used to assist ulcerative colitis patients when deciding between ileal pouch-anal anastomosis (IPAA) and ileostomy. Methods: Three separate systematic reviews (quality of life studies, IPAA studies, ileostomy studies) were conducted to populate the decision aid with outcome probabilities. Meta-regression was used to select appropriate pooled outcomes. Results: Of 3920 studies reviewed, 9 studies reported on quality of life, 67 on outcomes following IPAA, and 11 following ileostomy. No difference in quality of life was found between procedures. Among IPAA patients, pooled pouch failure rate was 5.5%, with pouchitis being the most common complication (22%). Among ileostomy patients, the pooled rate of ileostomy revision was 17.1%. Conclusions: No surgical option is clearly superior and patients must weight specific risks and benefits in deciding between procedures. This newly developed decision aid may help patients decide which option is best for them

Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

BackgroundOver half of people with dementia live at home. We know little about what home support could be clinically effective or cost-effective in enabling them to live well.ObjectivesWe aimed to (1) review evidence for components of home support, identify their presence in the literature and in services in England, and develop an appropriate economic model; (2) develop and test a practical memory support package in early-stage dementia, test the clinical effectiveness and cost-effectiveness of routine home support in later-stage dementia and design a toolkit based on this evidence; and (3) elicit the preferences of staff, carers and people with dementia for home support inputs and packages, and evaluate the cost-effectiveness of these approaches in early- and later-stage dementia.DesignWe undertook (1) an evidence synthesis, national surveys on the NHS and social care and an economic review; (2) a multicentre pragmatic randomised trial [Dementia Early Stage Cognitive Aids New Trial (DESCANT)] to estimate the clinical effectiveness and cost-effectiveness of providing memory aids and guidance to people with early-stage dementia (the DESCANT intervention), alongside process evaluation and qualitative analysis, an observational study of existing care packages in later-stage dementia along with qualitative analysis, and toolkit development to summarise this evidence; and (3) consultation with experts, staff and carers to explore the balance between informal and paid home support using case vignettes, discrete choice experiments to explore the preferences of people with dementia and carers between home support packages in early- and later-stage dementia, and cost–utility analysis building on trial and observational study.SettingThe national surveys described Community Mental Health Teams, memory clinics and social care services across England. Recruitment to the trial was through memory services in nine NHS trusts in England and one health board in Wales. Recruitment to the observational study was through social services in 17 local authorities in England. Recruitment for the vignette and preference studies was through memory services, community centres and carers’ organisations.ParticipantsPeople aged > 50 years with dementia within 1 year of first attendance at a memory clinic were eligible for the trial. People aged > 60 years with later-stage dementia within 3 months of a review of care needs were eligible for the observational study. We recruited staff, carers and people with dementia for the vignette and preference studies. All participants had to give written informed consent.Main outcome measuresThe trial and observational study used the Bristol Activities of Daily Living Scale as the primary outcome and also measured quality of life, capability, cognition, general psychological health and carers’ sense of competence.MethodsOwing to the heterogeneity of interventions, methods and outcome measures, our evidence and economic reviews both used narrative synthesis. The main source of economic studies was the NHS Economic Evaluation Database. We analysed the trial and observational study by linear mixed models. We analysed the trial by ‘treatment allocated’ and used propensity scores to minimise confounding in the observational study.ResultsOur reviews and surveys identified several home support approaches of potential benefit. In early-stage dementia, the DESCANT trial had 468 randomised participants (234 intervention participants and 234 control participants), with 347 participants analysed. We found no significant effect at the primary end point of 6 months of the DESCANT intervention on any of several participant outcome measures. The primary outcome was the Bristol Activities of Daily Living Scale, for which scores range from 0 to 60, with higher scores showing greater dependence. After adjustment for differences at baseline, the mean difference was 0.38, slightly but not significantly favouring the comparator group receiving treatment as usual. The 95% confidence interval ran from –0.89 to 1.65 (p = 0.56). There was no evidence that more intensive care packages in later-stage dementia were more effective than basic care. However, formal home care appeared to help keep people at home. Staff recommended informal care that cost 88% of formal care, but for informal carers this ratio was only 62%. People with dementia preferred social and recreational activities, and carers preferred respite care and regular home care. The DESCANT intervention is probably not cost-effective in early-stage dementia, and intensive care packages are probably not cost-effective in later-stage dementia. From the perspective of the third sector, intermediate intensity packages were cheaper but less effective. Certain elements may be driving these results, notably reduced use of carers’ groups.LimitationsOur chosen outcome measures may not reflect subtle outcomes valued by people with dementia.ConclusionsSeveral approaches preferred by people with dementia and their carers have potential. However, memory aids aiming to affect daily living activities in early-stage dementia or intensive packages compared with basic care in later-stage dementia were not clinically effective or cost-effective.Future workFurther work needs to identify what people with dementia and their carers prefer and develop more sensitive outcome measures.Study registrationCurrent Controlled Trials ISRCTN12591717. The evidence synthesis is registered as PROSPERO CRD42014008890.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information

LATINA IMMIGRANTS, HIV, AND THEIR EXPIERENCES WITH HEALTH CARE PROVIDERS IN THE U.S. AND THEIR HOME COUNTRY

The intersection of factors associated with immigration in the Latina population and available culturally sensitive health care has not been well examined. There is a scarcity of research available that examines factors specific to the Latina population that contribute to HIV/AIDS education, screening, and care, despite the vulnerable state of Latinas for contracting HIV/AIDS. For the Latina immigrant population, perceptions of U.S. providers of patients in relation to encounters with providers from their countries of origin are important, and may influence subsequent patient and healthcare provider interactions, including potential for screening, education, and care in the U.S. Two articles were completed for this study: (a) a systematic review of literature presented on the efficacy for using Latino community-based organizations as a more culturally appropriate and effective way to raise the awareness of need for HIV information and screenings with Latinas, and (b) a community-based participatory research study, pertaining to sexual health education and screening of Latina immigrants. Based on these findings, recommendations are made for researchers, healthcare providers, and policymakers who work with Latina immigrants seeking or in need of HIV/AIDS education, screening, or health care.Ph.D

Probiotic Yoghourt for Health, Nutrition and Women\u27s Empowerment in Kenya: A Community-Based Approach

The dissertation aims to examine the impacts of probiotic yoghourt on health, nutrition and women’s empowerment within the context of HIV/AIDS in Kenya. Mixed methods that combine quantiative and qualitative approaches are used to understand the effects of probiotic yoghourt on the health, nutrition and quality of life for men and women. Results of the quantiative analysis (n=227) demonstrated that the probiotic yoghourt confers a variety of health benefits – physiological (fewer urogenital conditions and digestive problems; reduced dependence on medical treatment), and psychological (perceived improvements with bodily appearance, felt an increased meaningfulness with life). Results of the qualitative analysis (n=26) revealed an overall improved quality of life based on the six domains of the WHOQOL assessment tool. A supplemental qualtiative study and analysis that examines the ways in which this health and development initiative promotes empowerment, social and economic development revealed that while there are substantial and important direct and indirect benefits, there are challenges with group dynamics, class, and power structures. Theoretically, the study highlights the need to revisit the group approach of health and development projects. While this method undebiably empowers the women at the individual level within a number of domains, the group structure can be cosnidered to counteract some of the gains and positive effects. Methodologically, the research shows the value of employing a mixed methods design. Usually, biomedical research using clinical study designs do not adopt mixed methods to describe the experiences of the participants. Building on the survey findings, deeper and richer insights into the impacts of the probiotic yoghourt on the health and quality of life of participants is gained. Lastly, the findings from this research provides a platform for policy makers to re-examine the importance and need to incorporate nutritional support programmes that are holistic and mutli-faceted, targeting marginalized groups

Informing an ICT intervention for HIV and AIDS education at Rhodes University

This study captures the process and methods used in selecting and organising content for an ontology. In the Information and Communication Technology (ICT) field ontology refers to a way of organising and storing information and facilitating interaction between the system and its users. Ontologies are being used more frequently to provide services that deal with complex information. In this study, I record my experience of developing content for an HIV and AIDS ontology for Rhodes University students. Using several different methods, I started the process of selecting and organising HIV and AIDS information, free of scientific jargon and prescriptive language, and consisting only of relevant information. I used data derived from interviews with six HIV and AIDS experts to develop questions for a survey that was open to all Rhodes University students. The 689 people who responded to the survey indicated that they needed more information on testing, treatment and living with HIV. Responses also showed that students had a lot of information on HIV prevention and transmission. Four focus group discussions revealed that students were tired of repetitions of the „same‟ information on HIV and AIDS and wanted to know more about life after contracting HIV. Using this data, I propose some guidelines to populate HIV and AIDS ontology. Ontologies can be customized for particular groups of users, for example according to gender, race, year of study etc. Another advantage of the ontology is that it can be expanded or contracted depending on the scope of one‟s intervention

Decision analysis under uncertainity for sustainable development

Aplicat embargament des de la data de defensa fins el 31 de desembre de 2019Policy-making for sustainable development becomes more efficient when it is reliably backed by evidence-based decision analysis. Concretely, this is crucial in the planning of public services delivery. By translating "raw" data into information, decision analysis illuminates our judgment, and ultimately the policies we adopt. In the context of public services provision, decision analysis can support the prioritization of policy options and the monitoring of progress. However, most models are deterministic - that is, they do not consider the uncertainty in their evidence. These "incomplete" models, through their impact in policy decisions, can ultimately lead to an inefficient use of resources. The main barriers to a wider incorporation of uncertainty are: (i) the complexity of the approaches currently available, and (ii) the need to develop methods tailored to the specific decision problems faced in public services delivery. To overcome these limitations, this thesis intends to facilitate the incorporation of uncertainty in the evidence into decision analysis for sustainable development. We propose two methods. First, a non-compensatory multi-criteria prioritization under uncertainty model. Given multiple criteria and uncertain evidence, the model identifies the best policy option to improve service provision for sustainable development. The non-compensatory nature of our model makes it an attractive alternative to the widely used composite index approach. Second, a compositional trend analysis under uncertainty model to monitor service coverage. By considering the non-negativity and constant-sum constraints of the data, our model provides better estimates for measuring progress than standard statistical approaches. These two methods are validated in real case studies in the energy, water and health sectors. We apply our prioritization model to the context of strategic renewable energy planning, and the targeting of water, sanitation and hygiene services. Furthermore, we use our trend analysis model to the global monitoring of water and sanitation and child mortality. Our results emphasize the importance of considering and incorporating uncertainty in the evidence into decision analysis, particularly into prioritization and monitoring processes, both central to sustainable development practice.La formulación de políticas para el desarrollo sostenible es más eficiente cuando está respaldada por un análisis de decisiones basado en evidencia. Esto es especialmente crucial en la planificación de la prestación de servicios públicos. Al transformar los datos "brutos" en información, el análisis de decisiones ilumina nuestro juicio y, en última instancia, las políticas que adoptamos. En el contexto de la provisión de servicios públicos, el análisis de decisiones puede apoyar la priorización de las políticas públicas, así como el monitoreo del progreso. Sin embargo, la mayoría de los modelos son deterministas, es decir, no consideran la incertidumbre presente en la evidencia. Estos modelos "incompletos" pueden, a través de su impacto en las decisiones políticas, conducir a un uso ineficiente de los recursos. Las principales barreras para una incorporación más amplia de la incertidumbre son: (i) la complejidad de los enfoques actualmente disponibles, y (ii) la necesidad de desarrollar métodos adaptados a los problemas de decisión específicos a la planificación de los servicios públicos. Para superar estas limitaciones, esta tesis pretende facilitar la incorporación de la incertidumbre presente en la evidencia en el análisis de decisiones para el desarrollo sostenible. Proponemos dos métodos. Primero, un modelo de priorización multicriterio no compensatorio bajo incertidumbre. Dados múltiples criterios y evidencias con incertidumbre, el modelo identifica la mejor política para mejorar la provisión de servicios para el desarrollo sostenible. La naturaleza no compensatoria de nuestro modelo lo convierte en una alternativa atractiva al enfoque de índices compuestos ampliamente utilizado. Segundo, un modelo de análisis de tendencias composicionales bajo incertidumbre para monitorear la cobertura de los servicios. Al considerar las restricciones de no negatividad y de suma constante de los datos, nuestro modelo proporciona mejores estimadores para medir el progreso que los enfoques estadísticos estándar. Estos dos métodos se validan en casos de estudio reales en los sectores de energía, agua y salud. Aplicamos nuestro modelo de priorización al contexto de la planificación estratégica de energías renovables y de los servicios de agua, saneamiento e higiene. Además, utilizamos nuestro modelo de análisis de tendencias para el monitoreo global del accesso a agua y saneamiento, así como de la reducción de la mortalidad infantil. Nuestros resultados enfatizan la importancia de considerar e incorporar la incertidumbre de la evidencia en el análisis de decisiones, particularmente en los procesos de priorización y monitoreo, ambos centrales para la práctica del desarrollo sostenible.Postprint (published version

Voluntary counselling and testing for HIV in the dental clinical setting: knowledge, attitudes, perceptions and practices of oral health care workers in the eThekwini District, Durban, South Africa.

Masters Degree. University of KwaZulu-Natal, Durban.Abstract available in pdf

Fast track: The practice of drug development and regulatory innovation in the late Twentieth Century U.S

This thesis examines the laws and regulations created in the 1980s and 1990s in the U.S. to hasten development, evaluation, and approval of drugs to treat serious and lifethreatening diseases, and to allow access of seriously ill patients to investigational drugs on a pre-market approval basis. Using detailed historical exposition in tandem with the social-theoretic tools of the sociology of scientific knowledge (SSK), and particularly Barnes’s account of meaning finitism, this thesis examines the social origin, definition, and case-by-case application of conceptual categories in the regulatory oversight of drug development and approval. With this approach, rules and standards for drug approval are shown not to be fossilised machinery for decision-making, but rather living, socially produced and maintained, inherently revisable resources for action. Key conclusions from this study are that: the regulatory actions taken to confront AIDS in the 1980s, often considered to be a radical break with previous practice, had their conceptual origins in the 1960s and 1970s; rule-making is often constitutionally related to a creative process of rule-‘breaking’; tacit processes of consensus outside of, and prior to, formal consensus mechanisms for rule-making are often fundamental to the rule-making process, resulting in de facto ‘rules’ on which later, formal rule-writing can be based; as predicted by finitism, newly created categories of action in drug development and approval require reinterpretation of underlying concepts in related existing categories. The thesis also demonstrates the flexibility and revisable nature of existing conceptual resources for application to current circumstances, consistent with a finitist view of knowledge. While the conclusions of this research are based on only one area of regulation, they are suggestive for more general descriptions of regulatory action. Contemporary theories of regulation are typically designed as economic models or are viewed through traditional categories of law and political science. As a result, they tend to abstract reality, ignoring day-to-day administrative practice, idealizing the nature of rule-following and rulemaking, and ignoring tacit processes of consensus. This thesis brings an interdisciplinary perspective to the theory of regulation, suggesting the outlines of a ‘social’ theory of regulation more fully sensitive to the empirical reality of the social process of rule-making and rule-breaking in contemporary regulation

Contested knowledge, conflictive morality: HIV/AIDS, gender and sexuality in Puebla, Mexico

HIV/AIDS has highlighted the lack of understanding we have of cultural variations in ideas about sexual practice and identity. Whilst the South has been hit hard by the epidemic, the Mexican case is unique, and remains under-researched. Local ideas about sex, sexuality and gender, in conjunction with understandings and approaches to health affect perceptions of HIV and the risk of infection. However, health care policy evolves now in the context of an international medical community, and this thesis examines the problems these issues present. Anthropological research into transmission of HIV in Latin America has focussed almost exclusively on men, and in particular men who have sex with men. Implying that a bounded homosexual community exists, this does not account for the rapid spread of the virus in the heterosexual community. The problem of HIV/AIDS in Mexico is examined here as a shared one, and ethnographic data was gathered through informal interviewing with men and women in a self-help group, sex-workers, and low and middle income women. Public health policy normally side-steps the moral universe in the delivery of education/prevention programmes. Mexico has imported an international AIDS discourse produced in Anglo-Saxon cultures that privileges safe sex, monogamy and an idea of 'homosexual identity'. My argument that this policy cannot be applied indiscriminately iii the non-Anglo setting is borne out by the ideas people express about their sexual lives and practices. Recent theoretical work in the anthropology of gender theory has been used to explore the contradictions inherent in discussions of sexual identity, especially the differences that exist between ideological systems and practice, and some suggestions are also made for application of the research findings

Politics of women's empowerment in Nigerian HIV/AIDS prevention programmes: 2003-2007.

During the 1990s, empowerment through collective action became widely referred to by feminist anthropologists and health behaviouralists as a potential approach towards reducing HIV and AIDS amongst African women. However, conflicting understandings of empowerment ultimately positions African women as too disempowered to protect themselves from HIV and AIDS, but empowered enough through collective participation to challenge structural and gender inequalities that facilitate HIV transmission. By the next decade, many prevention programmes around the world were said to have been unsuccessful. This thesis explores these issues; first, by examining different understandings of empowerment; second, by investigating a potentially alternative model of participation underpinned by post-modern, feminist post-colonial and social psychological theory; and finally, by analysing women's own narratives of empowerment. To do so, this thesis reviews life histories of forty-five women aged between their twenties and sixties, participating in one of five women's associations. The movements and individuals were selected in order to consider the diversity of experiences across age, ethnicity, sexual identity, social class and religion. This consideration of the realities of women's lives found that gender and social identities shape women's individual and collective responses to HIV and AIDS in ways that extend beyond employing traditional prevention methods which are said to police sexual behaviour. Nevertheless, their diverse experiences also suggest alternative notions and sites of power, thus enabling them to employ strategies and charter avenues of agency that facilitate AIDS prevention in some contexts, but hinder it in others. These alternative notions of power and agency have implications for reconfiguring and expanding HIV and AIDS prevention and, possibly, gender relations. The thesis considers the extent to which alternative empowerment strategies, executed between the contours of donor- driven programmes and everyday reality, contribute to disrupting dominant discourses as well as gender norms and expectations predicated on tensions around representations of respectability, 'African' sexuality, spirituality, health and illness, and AIDS citizenship