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People with an intellectual disability experience the same range of emotional and mental needs as the general population. However, in comparison to the wealth of general counselling research, there is a relative lack of research involving clients with an intellectual disability. In particular, there is a scarcity of research exploring the clients’ subjective experiences of counselling. This thesis therefore seeks to gain a better understanding of this under-explored area of counselling practice by inquiring of the two parties most intimately acquainted with the counselling process – clients and counsellors. Complementing the views of clients and counsellors, the views of support workers and key informants are also described. Using a qualitative case study methodology, six clients with an intellectual disability were interviewed about their subjective experiences of counselling. Interviews were also conducted with their counsellors and with nominated support people. These interviews took place over a period of several months. In addition, single interviews were conducted with four key informants in order to gain an understanding of the local health and disability support services. This thesis explores the participants’ understandings of disability and counselling, discusses similarities and differences to general counselling and describes the outcomes of the six clients in this study. This thesis highlights four systemic problems that complicate the delivery of effective counselling services: (a) poverty, (b) health inequalities, (c) difficulties in the disability support workforce, and (d) social stigma. The thesis also draws attention to the need for specialised education for both counsellors and the disability support workforce. Researchers are invited to pursue further research. Practising counsellors are invited to engage in a rewarding, albeit complicated, area of professional practice.

Statement of the problem: Many methods for surrogate outcome validation require individual patient data which is often inaccessible by clinical trialists. Methods: A review was performed to identify statistical methods for surrogate outcome validation that may be implemented using summary data from published clinical trials. The methods were used to evaluate carotid intima-media thickness (CIMT) as a surrogate outcome for cardiovascular events in a systematic review of randomized trials of interventions for atherosclerosis. Results: the review of methods identified five procedures. At two or more years of follow-up, there was a marginally significant association of CIMT with myocardial infarction and a statistically significant association with cardiovascular mortality. At ≥ four years of follow-up, a statistically significant, negative relationship was observed between CIMT and stroke. Conclusions: CIMT may be a valid surrogate outcome for myocardial infarction and cardiovascular mortality. Additional data is needed to evaluate CIMT in specific drug classes.

Background: ANCA Associated Vasculitis (AAV) is a relatively rare autoimmune condition with the potential to cause life-threatening organ inflammation and failure. Due to the relative rarity, and the heterogenous way in which the disease may present, delay to diagnosis is common. Although initial immunosuppressive treatment is usually effective at controlling disease, morbidity associated with treatment is high and disease relapses frequent, necessitating further immunosuppression exposure. Aims and Objectives: This body of work therefore seeks to address 2 of the main challenges faced by the AAV population; 1) identifying factors that may contribute to a delay to diagnosis and disease recognition 2) reducing morbidity associated with the disease and the treatment. Methods: Patient pathways, knowledge and uptake of protective therapy were explored through a national patient report study. Patient care guidelines to assist with morbidity prevention were informed through Delphi consensus methodology and comprehensive literature review. The development of software to support implementation of a rigorous systematic approach to the assessment of the vasculitis patients was achieved through collaboration with information technology, business development and system architecture and design experts. Results: Patient presentation including symptoms, initial mis-diagnosis and eventual diagnosis appear to influence time to diagnosis. There is substantial delay from symptom onset to diagnosis demonstrating the need for increased awareness and education. Equally patient awareness of treatment related morbidity is low with variable uptake of protective therapy. A Delphi study has produced consensus on which guidelines can be based to address some of these inadequacies. A software programme: "Vasculitis Care Optimisation Tool (VasCOT)", has been designed to support implementation of these guidelines. Discussion: The various approaches used in this body of work have so far allowed evaluation of areas where patient care needs to be improved. This in part will be addressed through the publication of national vasculitis care guidelines, informed by this work and the ongoing development of VasCOT.

Statement of the problem: Many methods for surrogate outcome validation require individual patient data which is often inaccessible by clinical trialists. Methods: A review was performed to identify statistical methods for surrogate outcome validation that may be implemented using summary data from published clinical trials. The methods were used to evaluate carotid intima-media thickness (CIMT) as a surrogate outcome for cardiovascular events in a systematic review of randomized trials of interventions for atherosclerosis. Results: the review of methods identified five procedures. At two or more years of follow-up, there was a marginally significant association of CIMT with myocardial infarction and a statistically significant association with cardiovascular mortality. At ≥ four years of follow-up, a statistically significant, negative relationship was observed between CIMT and stroke. Conclusions: CIMT may be a valid surrogate outcome for myocardial infarction and cardiovascular mortality. Additional data is needed to evaluate CIMT in specific drug classes.

The focus of the study was the University of Dallas’ Rome Program, a mid-length study abroad program on the university’s campus in Rome, Italy. The program is designed to provide participants with the opportunity to encounter firsthand Western tradition by integrating the core curriculum through classroom teachings and class excursions, thus solidifying the foundation of the participants’ undergraduate education. Beyond this purpose, the Rome Program does not operate from established goals and objectives for student experience. I consulted relevant research literature to construct a schema of domains of development appropriate to this qualitative study. These domains were intellectual development, global perspective, career development, and spiritual development. I interviewed 20 University of Dallas seniors who participated in the mid-length study abroad program between fall 2009 and spring 2011, using an extended, semi-structured interview protocol. The participants included 11 females and 9 males; 19 White and 1 Hispanic. The findings were supported by subsequent review by 4 of the interviewed students. I found generally strong but inconsistent support for student development in each of the domains. A number of sub-themes are reported. Through the interviews, an additional theme of personal development emerged and is reported. Although the findings generally support the conclusion that the Rome Program is successful, good education practice leads to a recommendation of more explicit setting of goals by higher education program planners and administrators. Such goal setting provides rationale for program construction, provides students with their own goal framework, and establishes a tangible framework for ongoing program evaluation.

Background. Little is known about the current clinical profile and outcomes of patients with infective endocarditis (IE) in South Africa. Methods. We conducted a retrospective review of the records of patients admitted to Groote Schuur Hospital between 2009 and 2016 fulfilling universal criteria for definite or possible IE, in search of demographic, clinical, microbiological, echocardiographic, treatment and outcome information. Results. 105 patients fulfilled the modified Duke criteria for IE. The median age of the cohort was 39 years (IQR 29-51), with a male preponderance (61.9%). The majority of patients (72.4%) had left-sided native valve endocarditis, 14% had right-sided disease, and 13.3% had prosthetic valve endocarditis. A third of the cohort had rheumatic heart disease. Although 41.1% of patients with left-sided disease had negative blood cultures, the three most common organisms cultured in this subgroup were Staphylococcus aureus (18.9%), Streptococcus spp. (16.7%) and Enterococcus spp. (6.7%). Participants with right-sided endocarditis were younger (29 years (IQR 27-37)), were predominantly intravenous drug users (IVDU; 73.3%) and the majority cultured positive for S. aureus (73.3%) with frequent septic pulmonary complications (40.0%). The overall in-hospital mortality was 16.2%, with no deaths in the group with right-sided endocarditis. Predictors of death in our patients were heart failure (OR 8.16, CI 1.77-37.70; p=0.007) and an age > 45 years (OR 4.73, CI 1.11- 20.14; p=0.036). Valve surgery was associated with a reduction in mortality (OR 0.09, CI 0.02-0.43; p=0.003). Conclusions. Infective endocarditis in a typical teaching tertiary care centre in South Africa remains an important clinical problem. In this setting, it continues to affect mainly young people with post-inflammatory valve disease and congenital heart disease. IE is associated with an in-hospital mortality that remains high. Intravenous drug-associated endocarditis caused by S. aureus is an important IE subset, comprising approximately 10% of all cases, a fact which was not reported 15 years ago, and culture-negative endocarditis remains highly prevalent. Heart failure in IE carries significant risk of death and needs a more intensive level of care in hospital. Finally, cardiac surgery was associated with reduced mortality, with the largest impact in those patients with heart failure.

Osteosarcoma is a rare osteogenic cancer which is a predominantly pediatric/young adult disease but has a large adult population. Due to the skewed patient population, randomized clinical trials have focused on the younger osteosarcoma cases, and then applying these treatments to adults. Yet these treatments have not been tested in a prospective randomized clinical trial for adults for whether they achieve the same outcomes as those in the pediatric population. The purpose of this study is to compare outcomes of pediatric and adult osteosarcoma cases through a retrospective review of patients treated at two facilities, Dana-Farber Cancer Institute (DFCI) and Massachusetts General Hospital (MGH). A list of 2,263 potential patients was provided by the pathology departments of DFCI/MGH. Eligibility required: 1) the patient to be at least 18 YO at the time of diagnosis, 2) a pathology report confirming osteosarcoma, 3) the available follow-up data is greater than 1 year (unless the patient died within that year). The electronic charts were assessed for prognostic variables which includes; date of diagnosis, age at diagnosis, sex, primary disease site, tumor size, histologic response, and treatment course. The overall survival and metastasis free survival were based on the date of pathologic confirmation of osteosarcoma. The collected data was analyzed through the Kaplan-Meier method to produce overall survival and metastasis free survival curves. The 5-year OS and MFS rates were calculated with those alive at last follow-up censored from the analysis. The prognostic variables were tested for significant difference in OS and MFS by ANOVA and t-tests. Of potential patients, 177 were deemed eligible for this study and were found to have 5-year MFS and OS of 45.8% and 64.4%, respectively. When compared against results from a primarily pediatric/young adult study, our patient population had a significantly lower OS and MFS. This finding indicates that current treatment regimens have a shorter effect in adult osteosarcoma cases when compared to pediatric patients. Although pediatric patients have a sustained response to current treatment therapies, the adult cases of osteosarcoma have a significantly shortened outcome which needs to be addressed in future research.

Objective: To explore and describe how healthcare non-governmental organizations provide and evaluate programs and services that result in positive and sustainable health outcomes in children and adolescents living in low-and middle-income countries and to better understand the role of nursing within these organizations. Scoping Review: A scoping review informed by the Arksey & O’Malley framework was completed to explore the research on the delivery of pediatric health services by non-governmental organizations in low-and middle-income countries. Qualitative Study: Semi-structured interviews were conducted to share the voices and experiences of stakeholders working in the field of NGO practice to provide clarity, further insight and depth to the results from the scoping review and broaden the understanding of the role of nursing on this topic. Conclusions: Despite variability in practice and a multitude of competing priorities, outcome evaluation is growing within the field of pediatric NGO practice, and progress is being made towards evaluation of broader health outcomes besides unidimensional health indicators or outputs. Nurses can play a significant role in improving pediatric NGO program development and evaluation practices and are well positioned to be global health leaders who can influence policy and practice for the achievement of positive and sustainable health outcomes in children and adolescents in low-and middle-income countries.

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