“We raise up the voice of the voiceless”: Voice, Rights, and Resistance amongst Congolese Human Rights Defenders in Uganda

Amongst Uganda’s Congolese refugee population are a number of human rights defenders who actively resist the construction of refugees as dispossessed and displaced humanitarian aid recipients. Upon fleeing the complex and violent conflicts of the Democratic Republic of Congo, rather than supplicate to a humanitarian regime saturated with the language of human rights, these young men draw on human rights to “raise up the voice of the voiceless.” This article explores how defenders draw on human rights to understand, articulate, and resist the constraints of forced displacement into a humanitarian regime.Parmi les réfugiés d’origine congolaise en Ouganda se trouvent un certain nombre de défenseurs des droits de la personne qui résistent activement à la construction conceptuelle des réfugiés selon laquelle ils seraient tout simplement des bénéficiaires d’aide humanitaire démunis et déplacés. Après avoir fui les conflits complexes et violents qui ont ravagé la République démocratique du Congo, plutôt que d’être réduits à un statut de suppliants envers un régime humanitaire saturé par le discours des droits de la personne, ces jeunes hommes préfèrent puiser dans ces mêmes droits pour « donner voix à ceux qui n’ont pas de voix ». Cet article s’engage dans une exploration du processus selon lequel les droits de la personne peuvent se transformer en terrain fertile qui permet à ces défenseurs des droits de comprendre, d’articuler et de résister aux contraintes du déplacement forcé au sein d’un régime

Self-clearance of Mycobacterium tuberculosis infection: implications for lifetime risk and population at-risk of tuberculosis disease.

Background: it is widely assumed that individuals with Mycobacterium tuberculosis (Mtb) infection remain at lifelong risk of tuberculosis (TB) disease. However, there is substantial evidence that self-clearance of Mtb infection can occur. We infer a curve of self-clearance by time since infection and explore its implications for TB epidemiology. Methods and findings: data for self-clearance were inferred using post-mortem and tuberculin-skin-test reversion studies. A cohort model allowing for self-clearance was fitted in a Bayesian framework before estimating the lifetime risk of TB disease and the population infected with Mtb in India, China and Japan in 2019. We estimated that 24.4% (17.8-32.6%, 95% uncertainty interval (UI)) of individuals self-clear within 10 years of infection, and 73.1% (64.6-81.7%) over a lifetime. The lifetime risk of TB disease was 17.0% (10.9-22.5%), compared to 12.6% (10.1-15.0%) assuming lifelong infection. The population at risk of TB disease in India, China and Japan was 35-80% (95% UI) smaller in the self-clearance scenario. Conclusions: the population with a viable Mtb infection may be markedly smaller than generally assumed, with such individuals at greater risk of TB disease. The ability to identify these individuals could dramatically improve the targeting of preventive programmes and inform TB vaccine development, bringing TB elimination within reach of feasibility

Placing ‘sustainability’ in context: narratives of sustainable consumption in Nanjing, China

This article examines how ordinary people practice the notion of ‘sustainable consumption’ in relation to their everyday lives and experiences of the wider environment and how these understandings relate to public discourses of sustainability in contemporary China. The paper is based on an empirical analysis of 129 narrative interviews with local residents in urban Nanjing, collected as part of an interdisciplinary and international comparative research project. It argues that in popular narratives, a combination of ‘being green’ – living a healthy lifestyle which has less impact on the environment – and being rational through qinjian jieyue – by reducing both consumption and waste –is regarded as key to sustainability. Such attitudes align with recent government campaigns to create an environmental-friendly and resource-conserving society. However, the analysis demonstrates how this sustainable way of consumption is restricted by Chinese mianzi and guanxi cultures, the anxieties caused by scares related to food safety, a social welfare system that does not promote a sense of security and a widespread distrust of products made in China which has diffused across society. We argue that studies on discourses and practices of sustainable consumption must strive to take more account of diverse local contexts and sociocultural frameworks

Intergenerational Community-Based Research and Creative Practice: Promoting Environmental Sustainability in Jinja, Uganda

This article critically reflects on the methodological approach developed for a recent project based in Jinja, Uganda, that sought to generate new forms of environmental knowledge and action utilizing diverse forms of creative intergenerational practice embedded within a broader framework of community-based participatory research. This approach provided new opportunities for intergenerational dialogue in Jinja, generated increased civic environmental engagement, and resulted in a participant-led campaign to share knowledge regarding sustainable biomass consumption. We term this approach intergenerational community-based research and creative practice. We discuss the advantages of this model while also reflecting throughout on the challenges of the approach

‘An elephant cannot fail to carry its own ivory’: Transgenerational ambivalence, infrastructure and sibling support practices in urban Uganda

This article examines how urban Ugandans navigate family support systems through a focus on the under-researched area of sibling care practices. We conceptualise such systems as transgenerational infrastructure to capture the complex flows, negotiations and dilemmas of both inter- and intra-generational relationships, orderings and power, situating family support practices within their spatial, structural and social contexts. Drawing on grounded narratives of lived experience collected in Jinja, Uganda, the article offers an alternative interpretation to what is commonly portrayed as a weakening of family support systems in sub-Saharan Africa. We develop a transgenerational ambivalence perspective which allows for a deeper understanding of the heterogeneity and fluidity of family support as an ethical practice replete with complex emotions and dilemmas shaped in the junctures between social norms, agency, resources and material conditions. Through focusing on working-age Ugandans, we demonstrate the potential for a transgenerational ambivalence approach to make visible contradictions at structural and subjective levels and focus greater attention on the importance of sibling relationships and birth order than is evident in the existing intergenerational literature. This can help researchers in the task of linking family dynamics to the growing precarity and uncertainties of life in the marginal socio-economic contexts of urban sub-Saharan Africa

Significant benefits of AIP testing and clinical screening in familial isolated and young-onset pituitary tumors

Context Germline mutations in the aryl hydrocarbon receptor-interacting protein (AIP) gene are responsible for a subset of familial isolated pituitary adenoma (FIPA) cases and sporadic pituitary neuroendocrine tumors (PitNETs). Objective To compare prospectively diagnosed AIP mutation-positive (AIPmut) PitNET patients with clinically presenting patients and to compare the clinical characteristics of AIPmut and AIPneg PitNET patients. Design 12-year prospective, observational study. Participants & Setting We studied probands and family members of FIPA kindreds and sporadic patients with disease onset ≤18 years or macroadenomas with onset ≤30 years (n = 1477). This was a collaborative study conducted at referral centers for pituitary diseases. Interventions & Outcome AIP testing and clinical screening for pituitary disease. Comparison of characteristics of prospectively diagnosed (n = 22) vs clinically presenting AIPmut PitNET patients (n = 145), and AIPmut (n = 167) vs AIPneg PitNET patients (n = 1310). Results Prospectively diagnosed AIPmut PitNET patients had smaller lesions with less suprasellar extension or cavernous sinus invasion and required fewer treatments with fewer operations and no radiotherapy compared with clinically presenting cases; there were fewer cases with active disease and hypopituitarism at last follow-up. When comparing AIPmut and AIPneg cases, AIPmut patients were more often males, younger, more often had GH excess, pituitary apoplexy, suprasellar extension, and more patients required multimodal therapy, including radiotherapy. AIPmut patients (n = 136) with GH excess were taller than AIPneg counterparts (n = 650). Conclusions Prospectively diagnosed AIPmut patients show better outcomes than clinically presenting cases, demonstrating the benefits of genetic and clinical screening. AIP-related pituitary disease has a wide spectrum ranging from aggressively growing lesions to stable or indolent disease course

“Another war”: stories of violence, humanitarianism and human rights amongst Congolese refugees in Uganda

EMBARGOED - permanentl

Exploring the contribution of case study research to the evidence base for occupational therapy: a scoping review

Abstract Background Case study research is generating interest to evaluate complex interventions. However, it is not clear how this is being utilized by occupational therapists or how feasible it is to contribute to the evidence base. This scoping review explores case study research within occupational therapy in terms of how it is defined, the methodological characteristics adopted, such as data collection and analysis, and the range of practice contexts in which it is applied. We consider the viability of case study research for contributing to our evidence base. Methods Opinion, text and empirical studies within an occupational therapy practice context were included. A three-step extensive search following Joanna Briggs Institute methodology was conducted in June 2020 and updated in July 2021 across ten databases, websites, peer-reviewed and grey literature from 2016 onwards. Study selection was completed by two independent reviewers. A data extraction table was developed and piloted and data charted to align with research questions. Data extraction was completed by one reviewer and a 10% sample cross checked by another. Results Eighty-eight studies were included in the review consisting of (n = 84) empirical case study and (n = 4) non-empirical papers. Case study research has been conducted globally, with a range of populations across different settings. The majority were conducted in a community setting (n = 48/84; 57%) with populations experiencing neurodevelopmental disorder (n = 32/84; 38%), stroke (n = 14/84;17%) and non-diagnosis specific (n = 13/84; 15%). Methodologies adopted quantitative (n = 42/84; 50%), mixed methods (n = 22/84; 26%) and qualitative designs (n = 20/84; 24%). However, identifying the methodology and ‘case’ was a challenge due to methodological inconsistencies. Conclusions Case study research is useful when large-scale inquiry is not appropriate; for cases of complexity, early intervention efficacy, theory testing or when small participant numbers are available. It appears a viable methodology to contribute to the evidence base for occupation and health as it has been used to evaluate interventions across a breadth of occupational therapy practice contexts. Viability could be enhanced through consistent conduct and reporting to allow pooling of case data. A conceptual model and description of case study research in occupational therapy is proposed to support this. Systematic review registration Open Science Framework 10.17605/OSF.IO/PCFJ6