29 research outputs found

    Participatory Spatial Intervention: How can participatory design and a diversity lens help address vulnerabilities in Bar Elias, Lebanon?

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    The Participatory Spatial Intervention (PSI) is a co-produced way to build capacity and generate knowledge through an experimental process aiming to have an impact on the sustainable prosperity of a locality. A physical spatial intervention is embedded in a participatory action-research process and becomes a catalyst for generating questions and activate local social processes. The PSI documented in this report has been implemented as an activity of the project ‘Public Services and vulnerability in the Lebanese context of large-scale displacement’ funded by the British Academy’s Cities and Infrastructure programme. This work took place in Bar Elias, one of the most vulnerable localities in Lebanon (UNHCR, 2015), which hosts a large number of refugees and vulnerable populations, and faces a lack of access to basic services and livelihood opportunities. Throughout the process, we adopted a reflective approach by documenting our learning. This report presents the process of implementing the PSI, its methodology, and our reflection as a way of sharing our experience of this collaborative research that took place between August 2018 and July 2019

    Participatory design and diversity: Addressing vulnerabilities through social infrastructure in a Lebanese town hosting displaced people

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    In a fragmented society, we argue that action-research and participatory design can build the capacity for intra-city dialogue across the different dimensions of identity of local residents. However, traditional participatory processes are often unable to deal with internal diversity, particularly when there are pre-existing conflicts. Using a collaboration between two universities, an NGO, and local residents in Bar Elias (Lebanon) as a case study, we demonstrate how the development of an intersectional methodology sensitive to social diversity can contribute to individuals and groups of residents developing an “aware participation” in city-making and in setting the vision for the city. Bar Elias was a small agricultural town until its population significantly increased with the arrival of people displaced from the Syrian war, and hosts Syrians, Palestinians, and Lebanese but presents spatial segregation. As the main site used regularly by all groups, the entrance road to the town was chosen as the site of the action-research and participatory design to plan and implement small-scale social infrastructure enhancements which could help address a number of vulnerabilities faced by different groups of residents. By analysing the process of implementing this participatory spatial intervention, the chapter argues that the outcome of the process was more than the physical infrastructure intervention; the process built a human infrastructure made of residents of the city with different identities who have been able to participate in and initiate city-making processes that have taken into account and analyse a diversity of needs and aspirations. Through the process, residents were able to exercise a new kind of participatory urban citizenship that transcends the limitations of traditional national citizenship

    Child Development and Participation in Urban Displacement

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    Towards a shared prosperity: co-designing solutions in Lebanon’s spaces of displacement

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    This article argues that a citizen science and participatory planning approach to infrastructure can lead to significant outcomes for improving quality of life, as well as building pathways to shared prosperity in diverse urban environments. Drawing on examples from Lebanon — a country that is heavily impacted by displacement from neighbouring Syria — the article argues that the practice of co-design creates opportunities for social inclusion and engagement that are often missing from top-down infrastructural development projects. This point is illustrated through the case studies of Ziad Kalthoum’s (2018) film Taste of Cement and a participatory spatial intervention organised by a British Academy-funded project in which the authors took part. Focussing specifically on the dimension of subjectivity, the article claims that participatory planning that engages both hosts and refugees can encourage collective aspirations and affirmation of difference rather than the social divisions and negative stereotyping that often result from infrastructural exclusions

    Nurses' perceptions of online continuing education

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    <p>Abstract</p> <p>Background</p> <p>There is increasing attention to online learning as a convenient way of getting professional training. The number and popularity of online nursing continuing education programs are increasing rapidly in many countries. Understanding these may contribute to designing these programs to maximize success. Also, knowing the perceptions and preferences in online learning aids development and orientation of online programs. The aims of this study are to show nurses' perceptions of online continuing education and to determine perceptions of various groups; area groups, working companies, frequency of computer usage and age.</p> <p>Methods</p> <p>The survey method was used in this quantitative study to reveal perception levels and relationship with related variables. Data were collected through an online instrument from a convenience sample of 1041 Registered Nurses (RNs) at an online bachelor's degree program. Descriptive and inferential analysis techniques were performed.</p> <p>Results</p> <p>Nurses generally have positive perceptions about online learning (<it>X </it>= 3.86; SD = 0.48). A significant difference was seen between nurses who used computers least and those with the highest computer usage [<it>F </it>(3, 1033) = 3.040; <it>P </it>< .05]. Neither nurses' ages nor lengths of working experience are significantly related to perceptions of online programs (<it>r </it>= -.013; <it>P </it>> .05 and <it>r </it>= -.036; <it>P </it>> .05, respectively). Nurses' perceptions are significantly different depending on the settings where they work [<it>F </it>(3,989) = 3.193; <it>P </it>< .05]. The difference between perceptions of nurses living in urban areas (<it>X </it>= 3.82; SD = .51) and those living in rural areas (<it>X </it>= 3.88; SD = .47) was not significant [<it>t </it>(994) = -1.570, <it>P </it>> .05].</p> <p>Conclusions</p> <p>We found that nurses regard online learning opportunities as suitable for their working conditions and needs. Nurses should be provided with continued training through online learning alternatives, regardless of age, working experience or area of residence.</p

    Disentangling molecular and clinical stratification patterns in beta-galactosidase deficiency

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    INTRODUCTION: This study aims to define the phenotypic and molecular spectrum of the two clinical forms of ÎČ-galactosidase (ÎČ-GAL) deficiency, GM1-gangliosidosis and mucopolysaccharidosis IVB (Morquio disease type B, MPSIVB). METHODS: Clinical and genetic data of 52 probands, 47 patients with GM1-gangliosidosis and 5 patients with MPSIVB were analysed. RESULTS: The clinical presentations in patients with GM1-gangliosidosis are consistent with a phenotypic continuum ranging from a severe antenatal form with hydrops fetalis to an adult form with an extrapyramidal syndrome. Molecular studies evidenced 47 variants located throughout the sequence of the GLB1 gene, in all exons except 7, 11 and 12. Eighteen novel variants (15 substitutions and 3 deletions) were identified. Several variants were linked specifically to early-onset GM1-gangliosidosis, late-onset GM1-gangliosidosis or MPSIVB phenotypes. This integrative molecular and clinical stratification suggests a variant-driven patient assignment to a given clinical and severity group. CONCLUSION: This study reports one of the largest series of b-GAL deficiency with an integrative patient stratification combining molecular and clinical features. This work contributes to expand the community knowledge regarding the molecular and clinical landscapes of b-GAL deficiency for a better patient management

    Dihydropyridine receptor (DHPR, CACNA1S) congenital myopathy

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    Muscle contraction upon nerve stimulation relies on excitation–contraction coupling (ECC) to promote the rapid and generalized release of calcium within myofibers. In skeletal muscle, ECC is performed by the direct coupling of a voltage-gated L-type Ca2+ channel (dihydropyridine receptor; DHPR) located on the T-tubule with a Ca2+ release channel (ryanodine receptor; RYR1) on the sarcoplasmic reticulum (SR) component of the triad. Here, we characterize a novel class of congenital myopathy at the morphological, molecular, and functional levels. We describe a cohort of 11 patients from 7 families presenting with perinatal hypotonia, severe axial and generalized weakness. Ophthalmoplegia is present in four patients. The analysis of muscle biopsies demonstrated a characteristic intermyofibrillar network due to SR dilatation, internal nuclei, and areas of myofibrillar disorganization in some samples. Exome sequencing revealed ten recessive or dominant mutations in CACNA1S (Cav1.1), the pore-forming subunit of DHPR in skeletal muscle. Both recessive and dominant mutations correlated with a consistent phenotype, a decrease in protein level, and with a major impairment of Ca2+ release induced by depolarization in cultured myotubes. While dominant CACNA1S mutations were previously linked to malignant hyperthermia susceptibility or hypokalemic periodic paralysis, our findings strengthen the importance of DHPR for perinatal muscle function in human. These data also highlight CACNA1S and ECC as therapeutic targets for the development of treatments that may be facilitated by the previous knowledge accumulated on DHPR

    Gain and loss of TASK3 channel function and its regulation by novel variation cause KCNK9 imprinting syndrome

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    Background: Genomics enables individualized diagnosis and treatment, but large challenges remain to functionally interpret rare variants. To date, only one causative variant has been described for KCNK9 imprinting syndrome (KIS). The genotypic and phenotypic spectrum of KIS has yet to be described and the precise mechanism of disease fully understood. Methods: This study discovers mechanisms underlying KCNK9 imprinting syndrome (KIS) by describing 15 novel KCNK9 alterations from 47 KIS-affected individuals. We use clinical genetics and computer-assisted facial phenotyping to describe the phenotypic spectrum of KIS. We then interrogate the functional effects of the variants in the encoded TASK3 channel using sequence-based analysis, 3D molecular mechanic and dynamic protein modeling, and in vitro electrophysiological and functional methodologies. Results: We describe the broader genetic and phenotypic variability for KIS in a cohort of individuals identifying an additional mutational hotspot at p.Arg131 and demonstrating the common features of this neurodevelopmental disorder to include motor and speech delay, intellectual disability, early feeding difficulties, muscular hypotonia, behavioral abnormalities, and dysmorphic features. The computational protein modeling and in vitro electrophysiological studies discover variability of the impact of KCNK9 variants on TASK3 channel function identifying variants causing gain and others causing loss of conductance. The most consistent functional impact of KCNK9 genetic variants, however, was altered channel regulation. Conclusions: This study extends our understanding of KIS mechanisms demonstrating its complex etiology including gain and loss of channel function and consistent loss of channel regulation. These data are rapidly applicable to diagnostic strategies, as KIS is not identifiable from clinical features alone and thus should be molecularly diagnosed. Furthermore, our data suggests unique therapeutic strategies may be needed to address the specific functional consequences of KCNK9 variation on channel function and regulation

    Promoting Children’s Participation in Design

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