Neglected Tropical Disease as a ‘Biographical Disruption’: Listening to the Narratives of Affected Persons to Develop Integrated People Centred Care in Liberia

by Laura Dean, Rachel Tolhurst, Gartee Nallo, Karsor Kollie, Anthony Bettee, Sally Theobald BackgroundIntegrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals ’ unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond. MethodsWe purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory. FindingsFor all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of ‘biographical disruption’ triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the ‘sick role’ was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and s...
Source: PLoS Neglected Tropical Diseases - Category: Tropical Medicine Authors: Source Type: research

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ConclusionMS patients with a higher disability at TN onset and with a longer interval between MS and TN onset had differing clinical features and outcomes: pain was more frequently bilateral, surgery was more frequent and anticipated, and preventive medication discontinuation due to pain remission was less common.
Source: Multiple Sclerosis and Related Disorders - Category: Neurology Source Type: research
Publication date: November 2019Source: Journal of Hospital Infection, Volume 103, Issue 3Author(s): M.B.G. Koek, T.I.I. van der Kooi, F.C.A. Stigter, P.T. de Boer, B. de Gier, T.E.M. Hopmans, S.C. de Greeff, J. Entius, J.C.M. Diederen, E.H. Groenendijk, L. Nolles, K.P. Jalink-Olthof, B.J.H. den Broeder, H.G.M. BlaauwgeersSummaryBackgroundSurgical site infections (SSIs) are associated with morbidity, mortality and costs.AimTo identify the burden of (deep) SSIs in costs and disability-adjusted life years (DALYs) following colectomy, mastectomy and total hip arthroplasty (THA) in the Netherlands.MethodsA retrospective cost-an...
Source: Journal of Hospital Infection - Category: Infectious Diseases Source Type: research
This article explores the creation of a new social welfare system for physically disabled veterans and civilians of the Great War in Belgium during the early interwar period. Through an analysis of debates among ministers and legislators, doctor's opinions and the member's periodicals of the two largest national associations for war-wounded veterans and civilians it examines how these actors shaped a new set of benefits that caused significant socio-economic inequalities inside and between both groups of victims and in relation to physically disabled citizens without war injuries. Consequently, this article reveals how the...
Source: ALTER - European Journal of Disability Research - Category: Disability Source Type: research
Although the phenomenon of disability-related abuse has been well-documented in adults with disabilities, the occurrence of disability-related abuse in childhood has not been studied. Therefore, the purpose of this study was to establish proof of concept f...
Source: SafetyLit - Category: International Medicine & Public Health Tags: Age: Adolescents Source Type: news
Authors: Cabreira V, Massano J Abstract Parkinson's disease is the second most common neurodegenerative disorder, and a significant increase in its prevalence in the past three decades has been documented. Environmental and genetic factors contribute to the pathophysiology of this disease, and 5% - 10% of cases have a monogenic cause. The diagnosis relies on clinical findings, supported by adequate testing. There is no absolute method to diagnose Parkinson's disease in vivo, except for genetic testing in specific circumstances, whose usefulness is limited to a minority of cases. New diagnostic criteria have been re...
Source: Acta Medica Portuguesa - Category: General Medicine Tags: Acta Med Port Source Type: research
DNA collection from migrants who cross the US-Mexico border might be put in place soon, and the information will feed a large criminal database operated by the FBI, announced headlines early October. We’ve come a long way since the first direct-to-consumer (DTC) company, 23andme, started to offer ancestry DNA testing kits online. It seems as it was decades ago – while in fact, we’re speaking about 10-12 years. How has DTC genetic testing culminated in population genomics – and what can we expect in the future to come? In the second part of our article series about genomics and politics, we’ll ...
Source: The Medical Futurist - Category: Information Technology Authors: Tags: Genomics American biotechnology dna testing ethics future genes genetics policy-making politics regulation science US USA Source Type: blogs
ConclusionsThese results demonstrate the practical utility of HSI for the real-time detection of cerebral ischemia in rats. By providing rapid assessment of brain tissue perfusion, HSI may help doctors recognize ischemic regions quickly and precisely during surgery as well as have great utility in the experimental process.
Source: Journal of Neuroscience Methods - Category: Neuroscience Source Type: research
Publication date: Available online 16 October 2019Source: Journal of Structural BiologyAuthor(s): Salomé Llabrés, Maxim I Tsenkov, Stuart A MacGowan, Geoffrey J Barton, Ulrich ZachariaeAbstractTetratricopeptide repeat (TPR) proteins belong to the class of α-solenoid proteins, in which repetitive units of α-helical hairpin motifs stack to form superhelical, often highly flexible structures. TPR domains occur in a wide variety of proteins, and perform key functional roles including protein folding, protein trafficking, cell cycle control and post-translational modification. Here, we look at the TPR ...
Source: Journal of Structural Biology - Category: Biology Source Type: research
This article is part HuffPost’s Project Zero campaign, a yearlong series on neglected tropical diseases and efforts to eliminate them. More than 1 billion people on the planet suffer from illnesses that the world pays little attention to. Neglected tropical diseases are a group of at least 18 diseases that primarily affect people living in poverty in tropical regions of the world and are virtually unknown elsewhere, according to the World Health Organization. These are diseases like river blindness, which has infected 18 million people worldwide and caused blindness in 270,000 people; or...
Source: Science - The Huffington Post - Category: Science Source Type: news
Conclusions Lymphatic filariasis and other neglected tropical diseases, notably Buruli Ulcer, cutaneous leishmaniasis, leprosy, yaws, onchocerciasis and trachoma cause significant co morbidity associated with mental illness in patients. Studies to assess the prevalence of the burden of this co-morbidity should be incorporated into any future assessment of the Global Burden of neglected tropical diseases. The prevalence of depressive illness in caregivers who support those who suffer from these conditions is required. Such assessments are critical for neglected tropical diseases which have such a huge global prev...
Source: Infectious Diseases of Poverty - Category: Infectious Diseases Source Type: research
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