DISABLED VOICES IN DEVELOPMENT? The Implications of Listening to Disabled People in Burkina Faso

Development discourse and practice have generally ignored, even silenced, people with disabilities. In response, this thesis draws on the case of Burkina Faso to bring geographies of development and disability into dialogue with postcolonial theory, which seeks to recuperate the voices of the marginalised and oppressed. It adopts a mixed ethnographic methods approach, including participatory techniques and interviews, in order to understand the lived experiences of disabled people in Burkina Faso. The thesis first examines the general context of Burkina Faso and the different aspects of Burkinabe life and society in which disabled people’s lives unfold. These aspects are interlinked with the perceptions of disability in Burkina Faso, both in how society perceives disability and in how disabled people view themselves. These perceptions, which are explored subsequently, affect the lived experiences of disabled people, which are often not taken into account by development practitioners who intervene in disabled people’s lives using western models and ideologies. Furthermore, development interventions influence the creation and functioning of grassroots disabled people’s organisations, and here the thesis looks at the challenges these organisations face with regard to their heavy dependence on external partners as well as the lack of ‘organisational spirit’. Finally, the thesis examines disabled people’s perceptions of development and the emphasis on economic independence as an essential element in a disabled person’s life to challenge the predominant perception of disabled people as a burden. It highlights the significance of opening up spaces in which disabled people’s voices can be heard, using techniques such as participatory video, and the significance of having these voices heard by development practitioners. The findings indicate that there is a need to theorise disability from Global South perspectives, as well as to facilitate development through an engagement with the voices and agency of disabled people

Disabled people’s organisations and the disability movement: Perspectives from Burkina Faso

Background: In Burkina Faso, the disability movement is rather weak, both in terms of funding and staffing – its range does not extend far outside the capital city and is largely dependent on international non-governmental organisations (INGOs). Despite the huge number of grassroots disabled people’s organisations (DPOs), many of these organisations do not function beyond the occasional meeting and celebration of the International Day of Persons with Disabilities. The reasons for this are various, including dependency on external funding (such as from international organisations), lack of access to resources, being dependent on voluntary members, and lack of organisation. Objectives: This article looks at the functioning of – and politics governing – DPOs in Burkina Faso, their significance in the lives of people with disabilities and the challenges they encounter. Method: This article is based on research findings obtained through interviews conducted with people with disabilities, as well as INGOs working with people with disabilities and state authorities in Burkina Faso. Results: Evidence suggests that the farther people with disabilities are from the capital, the lesser are their chances of being heard and of being involved in decision-making. However, DPOs offer a haven for many, offering people with disabilities solace in meeting other members and finding a sense of belonging in these associations. Others give importance to the role of DPOs in raising awareness and human rights advocacy. Conclusion: Finally, the article raises the question as to what the future of DPOs in Burkina Faso might entail

Research study : violence in the lives of homeless women

Background: ‘Violence in the Lives of Homeless Women’ is a research about the experience of homeless women who suffered violence. The study was commissioned by YMCA and was carried out by Outlook Coop. The main researchers in this study were Dr Lara Bezzina and Mr. Holger Suarez.Research Purpose: The purpose of this study is to explore in-depth the experiences of present or former homeless women who suffered violence. The study has produced a number of recommendations to police-makers. Moreover, a Surviving Tool Kit and a Homelessness & Traumatic Stress Training Package has been developed based on the findings of this research.Definitions: Domestic Violence - According to Istanbul Convention, ‘domestic violence’ refers to: ‘all acts of physical, sexual, psychological or economic violence that occur within the family or domestic unit or between former or current spouses or partners, whether or not the perpetrator shares or has shared the same residence with the victim’ (Article 3b). Homelessness - In order to define homelessness in an operational way, The European Federation of National Organisations Working with the Homeless (FEANTSA) has identified three domains which constitute a ‘home’, the absence of which can be taken to delineate homelessness. ‘Having a home can be understood as: having an adequate dwelling (or space) over which a person and his/her family can exercise exclusive possession (physical domain); being able to maintain privacy and enjoy relations (social domain) and having legal title to occupation (legal domain)’. Ethos, European Typology of Homelessness and housing exclusion, FEANTSA (p. 1).Design: This study adopted a qualitative research design and the data collection strategy used included ten qualitative interviews with survivors. The interviews were audio-recorded and transcribed; the transcripts were coded using the methods employed in Grounded Theory.Results: Various issues have emerged and these include: • The influence of the family of origin and the long-lasting negative effects of inter-generational abuse; • Children: their protection, alienation and the painful separation from children; • Mental health problems and disability; • Experiences of homelessness, housing instability and issues with social housing; • The experience within the shelters and services and support outside the shelter; • The judiciary and helping professionals; • Trauma and resilience; • Evidence seems to suggest that while support exists for survivors, there are still gaps in services which need to be addressed in order to ensure that they are able to get back on their feet as soon as possible. As is evident from the results of this study, services need to take into account the multiple aspects of the survivor’s life, including physical and mental health, child support, temporary shelters, long-term housing, employment, education, social benefits, social networks, protection and justice.Limitations: The participants in this qualitative research are not representative of the whole population of survivors, thus generalisations must be cautionary. Furthermore, no participants could be identified in Gozo or within asylum seekers’ accommodation centres for this research study.peer-reviewe

Assessing the predictive value of first trimester ultrasound and biochemical markers in miscarriage : a scoping review

Introduction: Vaginal bleeding in the first trimester of pregnancy generates anxiety and uncertainty for expecting parents. The ability to determine pregnancy outcome through a first trimester ultrasound scan remains a challenge in obstetrics. Several first trimester ultrasound markers used individually or in combination, as well as ultrasound markers used in combination with biochemical markers, have been studied to determine their predictive value in pregnancy outcome. This scoping review was performed to determine which markers have already been investigated for this purpose.Methods: An extensive and systematic database search was performed using four different categories of keywords which were combined using Boolean terms. A total of 14 variables were included on the final data charting forms. Data was synthesised collectively for each variable and then separately for the studies analysing only one marker. For the studies which analysed multiple markers, data was synthesised based on the number of markers per study.Results: The search yielded 3608 studies, of which 128 were ultimately used for this review. Data extraction, based on predetermined eligibility criteria, was performed by two authors independently. Seventy-seven (62.6%) studies investigated the predictive value of a single ultrasound marker. The remaining 46 (37.4%) studies explored multiple markers, of which at least one was an ultrasound marker.Conclusion: This review identified several discrepancies among different studies. This highlights the need for better consensus among researchers to allow for the design of a predictive model which enables extrapolation of findings to all pregnant women.Implications for practice: Through the study of ultrasound and biochemical markers in the first trimester of pregnancy, clinicians may provide a more accurate prediction of pregnancy outcome following threatened miscarriage.peer-reviewe

Systematic review : legislation, policies, strategies & guidelines relating to disability in Malta

This Disability Systemic Review is another building block that provides us with a clearer picture of the data. In this repository we are seeking to further our knowledge in this field of study. ‘Disability’ is a very complex issue and these last 20 years has received a great deal of attention. The development and expansion of services needs to be commensurate with the knowledge base that we need to develop so that we can be in a better position to offer social policy recommendations. As a Faculty in collaboration with CRPD we are walking the talk and finding ways how to democratise our knowledge. Taking our data back to the community so that it serves as a way of resolving issues is what academic and our alma mater is about. The commitment of our academics, administrators and research support officers in this endeavour is second to none. We manage to produce so much data because we are not shy to work together and navigate around each other’s differences to produce high quality knowledge.peer-reviewe

Assessing the Predictive Value of First Trimester Ultrasound and Biochemical Markers in Miscarriage: A Scoping Review Protocol

The objective of this review is to report on first trimester ultrasound (US) and biochemical (BC) markers and miscarriage. The review seeks to examine whether first trimester US markers, used alone or in combination, or in combination with BC markers, may predict miscarriage. To meet this objective, the following research questions have been formulated: 1. Which first trimester US markers, individually or in combination, have already been examined? 2. Which BC markers have been examined in combination with first trimester US markers? 3. What is the predictive value of the identified markers in spontaneous miscarriage? A preliminary search of the area being investigated demonstrated that, since there is a high level of variation among different research publications (owing to diverse combinations of US and BC markers with varying diagnostic accuracy), extracted data is unable to be combined and evaluated. Therefore, it is difficult to perform a systematic review and meta-analysis of the literature (Munn et al., 2018)

Genotype-Phenotype Taxonomy of Hypertrophic Cardiomyopathy

BACKGROUND: Hypertrophic cardiomyopathy (HCM) is an important cause of sudden cardiac death associated with heterogeneous phenotypes, but there is no systematic framework for classifying morphology or assessing associated risks. Here, we quantitatively survey genotype-phenotype associations in HCM to derive a data-driven taxonomy of disease expression. METHODS: We enrolled 436 patients with HCM (median age, 60 years; 28.8% women) with clinical, genetic, and imaging data. An independent cohort of 60 patients with HCM from Singapore (median age, 59 years; 11% women) and a reference population from the UK Biobank (n=16 691; mean age, 55 years; 52.5% women) were also recruited. We used machine learning to analyze the 3-dimensional structure of the left ventricle from cardiac magnetic resonance imaging and build a tree-based classification of HCM phenotypes. Genotype and mortality risk distributions were projected on the tree. RESULTS: Carriers of pathogenic or likely pathogenic variants for HCM had lower left ventricular mass, but greater basal septal hypertrophy, with reduced life span (mean follow-up, 9.9 years) compared with genotype negative individuals (hazard ratio, 2.66 [95% CI, 1.42-4.96]; P&lt;0.002). Four main phenotypic branches were identified using unsupervised learning of 3-dimensional shape: (1) nonsarcomeric hypertrophy with coexisting hypertension; (2) diffuse and basal asymmetrical hypertrophy associated with outflow tract obstruction; (3) isolated basal hypertrophy; and (4) milder nonobstructive hypertrophy enriched for familial sarcomeric HCM (odds ratio for pathogenic or likely pathogenic variants, 2.18 [95% CI, 1.93-2.28]; P=0.0001). Polygenic risk for HCM was also associated with different patterns and degrees of disease expression. The model was generalizable to an independent cohort (trustworthiness, M1: 0.86-0.88). CONCLUSIONS: We report a data-driven taxonomy of HCM for identifying groups of patients with similar morphology while preserving a continuum of disease severity, genetic risk, and outcomes. This approach will be of value in understanding the causes and consequences of disease diversity.</p