Exploring the experiences of the sibling of a child with an intellectual disability

Thesis (MEdPsych)--Stellenbosch University, 2008.ENGLISH ABSTRACT: This study is aimed at gaining insight into the experiences of siblings of an individual with an intellectual and physical disability. Attaining greater insight into their lived reality, their feelings and concerns could make it possible to provide appropriate support. The review of selected literature provides information on many aspects of the these siblings' experience. Although many studies are quantitative in their approach, the literature review provides relevant and useful findings and inferences which were used to support and substantiate findings. During this qualitative study, which is situated within an interpretive phenomenological paradigm, four participants between the ages of eight and sixteen years were interviewed using semi-structured interviews. This format of interview allowed participants to use their own words to express their personal experiences. The results showed that siblings have both positive and negative experiences when another sibling has an intellectual disability. Other common difficulties include embarrassment, guilt, and the experience of differential treatment. Positive experiences and competencies include love and acceptance, personal growth, maturity, pride in siblings accomplishments, and appreciation for one's sibling. Several experiences were congruent with those mentioned in the literature. The insights into the experiences this study provides has implications for the development and provision of sibling support programmes and interventions. At present, state group support programmes for siblings are not provided within the Western Cape area. The interventions and assistance that do exist seem to be provided by the private sector only. Support can prove very costly, which means that it is not accessible to many who require it. Sibling workshop groups could provide a valuable support alternative to a currently "unsupported" group, the siblings.AFRIKAANSE OPSOMMING: Hierdie studie poog om insig te verkry in die ondervindings van die broers en susters van 'n kind met intellektuele en fisiese gestremdhede. Beter insig in die realiteit van hul leefwyse, hulle gevoelens en bekommernisse kan beter ondersteuning aan hulle moontlik te maak. Die ondersoek van geselekteerde literatuur voorsien inligting rakende vele aspekte van die ondervindings van hierdie kinders. Alhoewel baie van die studies kwantitatief in hul benadering is, het die bestaande literatuur tog relevante en bruikbare bydraes en gevolgtrekkings verskaf wat gebruik kon word om bevindings te bevestig en te staaf. Hierdie kwantitatiewe studie het plaasgevind in 'n verklarende fenomenologiese paradigma en vier semi-gestruktureerde onderhoude is gevoer met deelnemers tussen die ouderomme van 8 jaar en 16 jaar. Hierdie formaat van onderhoudvoering dra by dat deelnemers hulle gevoelens in hul eie woorde uitdruk. Die bevindings het gewys dat broers/susters beide positiewe en negatiewe ondervindings van kinders met 'n intellektuele gestremdheid het. Ander algemene probleme sluit in skaamte, skuldgevoelens en die gevoel van gedifferensieerde behandeling. Positiewe ondervindings en vaardighede van broers en susters sluit liefde en aanvaarding, persoonlike groei, volwassenheid, trots op die broers/suster se bekwaamheid en die waardering van so 'n broer/suster in. Verskeie van die ondervindings het ooreengestem met bevindings wat in die literatuur gevind is. Die insigte in hierdie ondervindings wat deur hierdie studie voorsien word het implikasies vir programme en intervensies wat ondersteuning aan hierdie kinders bied. Tans is daar nie sodanige staatsgefinansierde ondersteuningsprogramme in die Wes-Kaap area nie. Die intervensies en ondersteuning wat wel beskikbaar is word slegs in die privaatsektor aangebied. Ondersteuning kan baie duur wees, wat beteken dat dit vir baie kinders wat dit nodig het, ontoeganklik is. Ondersteuningsgroepwerkswinkels kan 'n waardevolle alternatief bied vir die "nieondersteunde" groep, die kinders

Analysis of Poisson count time series with unknown periodicity

See full text for abstractEThOS - Electronic Theses Online ServiceEPSRCGBUnited Kingdo

Data for Elimination of visceral leishmaniasis in the Indian subcontinent: a comparison of predictions from three transmission models: Warwick model description and parameter uncertainty analysis

We present three transmission models of visceral leishmaniasis (VL) in the Indian subcontinent (ISC) with structural differences regarding the disease stage that provides the main contribution to transmission, including models with a prominent role of asymptomatic infection, and fit them to recent case data from 8 endemic districts in Bihar, India. Following a geographical cross-validation of the models, we compare their predictions for achieving the WHO VL elimination targets with ongoing treatment and vector control strategies. All the transmission models suggest that the WHO elimination target (<1 new VL case per 10,000 capita per year at sub-district level) is likely to be met in Bihar, India, before or close to 2020 in sub-districts with a pre-control incidence of 10 VL cases per 10,000 people per year or less, when current intervention levels (60% coverage of indoor residual spraying (IRS) of insecticide and a delay of 40 days from onset of symptoms to treatment (OT)) are maintained, given the accuracy and generalizability of the existing data regarding incidence and IRS coverage. In settings with a pre-control endemicity level of 5/10,000, increasing the effective IRS coverage from 60 to 80% is predicted to lead to elimination of VL 1–3 years earlier (depending on the particular model), and decreasing OT from 40 to 20 days to bring elimination forward by approximately 1 year. However, in all instances the models suggest that L. donovani transmission will continue after 2020 and thus that surveillance and control measures need to remain in place until the longer-term aim of breaking transmission is achieved

Development of a health education intervention strategy using an implementation research method to control taeniasis and cysticercosis in Burkina Faso

Background: Taeniasis and cysticercosis are two diseases caused by Taenia solium, a parasite transmitted between humans and pigs, leading to considerable economic loss and disabilities. Transmission of the parasite is linked to environmental and behavioural factors such as inadequate sanitation and hygiene, poor pig management, and consumption of infected pork. This study used implementation research method to design a health education intervention strategy for reducing T. solium infections in Burkina Faso, a country endemic for the parasite. Methods: Eighteen group discussions were conducted with 8-18 participants each in three villages. In addition, structured interviews were conducted among 4 777 participants and 2 244 pig owners, who were selected through cluster random sampling in 60 villages of three provinces of Burkina Faso. Both approaches assessed knowledge and practices related to T. solium. The information obtained was used to develop a community-adapted health education intervention strategy to control taeniasis and cysticercosis in Burkina Faso. Results: The group discussions revealed that participants had a poor quality of life due to the diseases as well as inadequate access to latrines, safe water, and healthcare services. In addition, it was found that pig production was an important economic activity, especially for women. Furthermore, financial and knowledge constraints were important limitations to improved pig management and latrine construction. The survey data also showed that open defecation and drinking unboiled water were common behaviours, enhanced by a lack of knowledge regarding the transmission of the parasite, perceived financial barriers to the implementation of control measures, lack of public sensitization, as well as a lack of self-efficacy towards control of the parasite. Nevertheless, the perceived financial benefits of controlling porcine cysticercosis could be emphasized by an education program that discourages open defecation and encourages drinking safe water. The final intervention strategy included a Participatory Hygiene and Sanitation Transformation (PHAST) approach, as well as a 52-min film and an accompanying comic booklet. Conclusions: The main problem in the study communities regarding the transmission of T. solium cysticercosis is the random disposal of human faeces, which can be contaminated with parasite eggs. Prevention of open defecation requires the building of latrines, which can be quite problematic in economically challenged settings. Providing the community with the skills to construct durable latrines using low-cost locally available materials would likely help to resolve this problem. Further studies are required to implement and evaluate the T. solium control strategy developed in this study

A risk prediction algorithm for ovarian cancer incorporating BRCA1, BRCA2, common alleles and other familial effects.

BACKGROUND: Although BRCA1 and BRCA2 mutations account for only ∼27% of the familial aggregation of ovarian cancer (OvC), no OvC risk prediction model currently exists that considers the effects of BRCA1, BRCA2 and other familial factors. Therefore, a currently unresolved problem in clinical genetics is how to counsel women with family history of OvC but no identifiable BRCA1/2 mutations. METHODS: We used data from 1548 patients with OvC and their relatives from a population-based study, with known BRCA1/2 mutation status, to investigate OvC genetic susceptibility models, using segregation analysis methods. RESULTS: The most parsimonious model included the effects of BRCA1/2 mutations, and the residual familial aggregation was accounted for by a polygenic component (SD 1.43, 95% CI 1.10 to 1.86), reflecting the multiplicative effects of a large number of genes with small contributions to the familial risk. We estimated that 1 in 630 individuals carries a BRCA1 mutation and 1 in 195 carries a BRCA2 mutation. We extended this model to incorporate the explicit effects of 17 common alleles that are associated with OvC risk. Based on our models, assuming all of the susceptibility genes could be identified we estimate that the half of the female population at highest genetic risk will account for 92% of all OvCs. CONCLUSIONS: The resulting model can be used to obtain the risk of developing OvC on the basis of BRCA1/2, explicit family history and common alleles. This is the first model that accounts for all OvC familial aggregation and would be useful in the OvC genetic counselling process.This work has been supported by grants from Cancer Research UK (C1005/A12677, C12292/A11174, C490/A10119, C490/A10124) including the PROMISE research programme, the Eve Appeal and the UK National Institute for Health Research Biomedical Research Centre at the University of Cambridge.This is the final version of the article. It first appeared from BMJ Publishing via http://dx.doi.org/10.1136/jmedgenet-2015-10307

Staphylococcus aureus from patients with chronic rhinosinusitis show minimal genetic association between polyp and non-polyp phenotypes

Background: Staphylococcus aureus has a high prevalence in chronic rhinosinusitis (CRS) patients and is suggested to play a more etiopathogenic role in CRS patients with nasal polyps (CRSwNP), a severe form of the CRS spectrum with poorer surgical outcomes. We performed a microbial genome-wide association study (mGWAS) to investigate whether S. aureus isolates from CRS patients have particular genetic markers associated with CRS with nasal polyps (CRSwNP) or CRS without nasal polyps (CRSsNP). Methods: Whole genome sequencing was performed on S. aureus isolates collected from 28 CRSsNP and 30 CRSwNP patients. A mGWAS approach was employed using large-scale comparative genomics to identify genetic variation within our dataset. Results: Considerable genetic variation was observed, with >90,000 single nucleotide polymorphisms (SNPs) sites identified. There was little correlation with CRS subtype based on SNPs and Insertion/Delection (Indels). One indel was found to significantly correlate with CRSwNP and occurred in the promoter region of a bacitracin transport system ATP-binding protein. Additionally, two variants of the highly variable superantigen-like (SSL) proteins were found to significantly correlate with each CRS phenotype. No significant association with other virulence or antibiotic resistance genes were observed, consistent with previous studies. Conclusion: To our knowledge this study is the first to use mGWAS to investigate the contribution of microbial genetic variation to CRS presentations. Utilising the most comprehensive genome-wide analysis methods available, our results suggest that CRS phenotype may be influenced by genetic factors other than specific virulence mechanisms within the S. aureus genome

Education Research in the Canadian Context

This special issue of the International Journal of Education Policy &amp; Leadership (IJEPL), Research in the Canadian Context, marks a significant milestone for the journal. Throughout our twelve-year history, we have sought to publish the best research in leadership, policy, and research use, allowing authors to decide the topics by dint of their research. While this model still serves as the foundation for IJEPL content, we decided to give researchers a chance to engage in deeper conversations by introducing special issues. In our first special issue, researchers discuss their work within the scope of education policy, leadership, and research use within the Canadian context. While many aspects of leadership, teaching, and learning can be seen as similar across contexts, there are also issues of particular concern within national, regional, provincial, or local spheres, particularly when looking at policy and system changes. The researchers featured in this issue provide an important look into education in Canada.PolicyIn the policy realm, Sue Winton and Lauren Jervis examine a 22-year campaign to change special education assessment policy in Ontario, examining how discourses dominant in the province enabled the government to leave the issue unresolved for decades. Issues of access and equity play out within a neoliberal context focused on individualism, meritocracy, and the reduced funding of public services. While Winton and Jervis highlight the tension between policy goals and ideological contexts, Jean-Vianney Auclair considers the place of policy dialogues within governmental frames, and the challenge of engaging in broadly applicable work within vertically structured governmental agencies. One often-touted way to move beyondResearch useWithin the scope of research use, Sarah L. Patten examines how socioeconomic status (SES) is defined and measured in Canada, the challenges in defining SES, and potential solutions specific to the Canadian context. In looking at knowledge mobilization, Joelle Rodway considers how formal coaches and informal social networks nserve to connect research, policy, and practice in Ontario’s Child and Youth Mental Health program.LeadershipTurning to leadership, contributing researchers explored the challenges involved in staff development, administrator preparation, and student outcomes. Keith Walker and Benjamin Kutsyuruba explore how educational administrators can support early career teachers to increase retention, and the somewhat haphazard policies and supports in place across Canada to bring administrators and new teachers together. Gregory Rodney MacKinnon, David Young, Sophie Paish, and Sue LeBel look at how one program in Nova Scotia conceptualizes professional growth, instructional leadership, and administrative effectiveness and the emerging needs of administrators to respond to issues of poverty, socioemotional health, and mental health, while also building community. This complex environment may mean expanding leadership preparation to include a broader consideration of well-being and community. Finally, Victoria Handford and Kenneth Leithwood look at the role school leaders play in improving student achievement in British Columbia, and the school district characteristics associated with improving student achievement.Taken together, the research in this special issue touches on many of the challenges in policy development, application, and leadership practice, and the myriad ways that research can be used to address these challenges. We hope you enjoy this first special issue of IJEPL

Elimination of visceral leishmaniasis in the Indian subcontinent: a comparison of predictions from three transmission models.

We present three transmission models of visceral leishmaniasis (VL) in the Indian subcontinent (ISC) with structural differences regarding the disease stage that provides the main contribution to transmission, including models with a prominent role of asymptomatic infection, and fit them to recent case data from 8 endemic districts in Bihar, India. Following a geographical cross-validation of the models, we compare their predictions for achieving the WHO VL elimination targets with ongoing treatment and vector control strategies. All the transmission models suggest that the WHO elimination target (<1 new VL case per 10,000 capita per year at sub-district level) is likely to be met in Bihar, India, before or close to 2020 in sub-districts with a pre-control incidence of 10 VL cases per 10,000 people per year or less, when current intervention levels (60% coverage of indoor residual spraying (IRS) of insecticide and a delay of 40days from onset of symptoms to treatment (OT)) are maintained, given the accuracy and generalizability of the existing data regarding incidence and IRS coverage. In settings with a pre-control endemicity level of 5/10,000, increasing the effective IRS coverage from 60 to 80% is predicted to lead to elimination of VL 1-3 years earlier (depending on the particular model), and decreasing OT from 40 to 20days to bring elimination forward by approximately 1year. However, in all instances the models suggest that L. donovani transmission will continue after 2020 and thus that surveillance and control measures need to remain in place until the longer-term aim of breaking transmission is achieved

Understanding the transmission dynamics of Leishmania donovani to provide robust evidence for interventions to eliminate visceral leishmaniasis in Bihar, India.

Visceral Leishmaniasis (VL) is a neglected vector-borne disease. In India, it is transmitted to humans by Leishmania donovani-infected Phlebotomus argentipes sand flies. In 2005, VL was targeted for elimination by the governments of India, Nepal and Bangladesh by 2015. The elimination strategy consists of rapid case detection, treatment of VL cases and vector control using indoor residual spraying (IRS). However, to achieve sustained elimination of VL, an appropriate post elimination surveillance programme should be designed, and crucial knowledge gaps in vector bionomics, human infection and transmission need to be addressed. This review examines the outstanding knowledge gaps, specifically in the context of Bihar State, India.The knowledge gaps in vector bionomics that will be of immediate benefit to current control operations include better estimates of human biting rates and natural infection rates of P. argentipes, with L. donovani, and how these vary spatially, temporally and in response to IRS. The relative importance of indoor and outdoor transmission, and how P. argentipes disperse, are also unknown. With respect to human transmission it is important to use a range of diagnostic tools to distinguish individuals in endemic communities into those who: 1) are to going to progress to clinical VL, 2) are immune/refractory to infection and 3) have had past exposure to sand flies.It is crucial to keep in mind that close to elimination, and post-elimination, VL cases will become infrequent, so it is vital to define what the surveillance programme should target and how it should be designed to prevent resurgence. Therefore, a better understanding of the transmission dynamics of VL, in particular of how rates of infection in humans and sand flies vary as functions of each other, is required to guide VL elimination efforts and ensure sustained elimination in the Indian subcontinent. By collecting contemporary entomological and human data in the same geographical locations, more precise epidemiological models can be produced. The suite of data collected can also be used to inform the national programme if supplementary vector control tools, in addition to IRS, are required to address the issues of people sleeping outside