Background: Cancer treatment and management require complicated clinical decision making to provide the highest quality of care for an individual patient. This is facilitated in part with ever-increasing availability of medications and treatments but hindered due to barriers such as access to care, cost of medications, clinician knowledge, and patient preferences or clinical factors. Although guidelines for cancer treatment and many symptoms have been developed to inform clinical practice, implementation of these guidelines into practice is often delayed or does not occur. Informatics-based approaches, such as clinical decision support, may be an effective tool to improve guideline implementation by delivering patient-specific and evidence-based knowledge to the clinician at the point of care to allow shared decision making with a patient and their family. The large amount of data in the electronic health record can be utilized to develop, evaluate, and implement automated approaches; however, the quality of the data must first be examined and evaluated. Methods: This dissertation addresses gaps the literature about clinical decision making for cancer care delivery. Specifically, following an introduction and review of the literature for relevant topics to this dissertation, the researcher presents three studies. In Study One, the researcher explores the use of clinical decision support in cancer therapeutic decision making by conducting a systematic review of the literature. In Study Two, the researcher conducts a quantitative study to describe the rate of guideline concordant care provided for prevention of acute chemotherapy-induced nausea and vomiting (CINV) and to identify predictors of receiving guideline concordant care. In Study Three, the researcher conducts a mixed-methods study to evaluate the completeness, concordance, and heterogeneity of clinician documentation of CINV. The final chapter of this dissertation is comprised of key findings of each study, the strengths and limitations, clinical and research implications, and future research. Results: In Study One, the systematic review, the researcher identified ten studies that prospectively studied clinical decision support systems or tools in a cancer setting to guide therapeutic decision making. There was variability in these studies, including study design, outcomes measured, and results. There was a trend toward benefit, both in process and patient-specific outcomes. Importantly, few studies were integrated into the electronic health record. In Study Two, of 180 patients age 26 years or less, 36% received guideline concordant care as defined by pediatric or adult guidelines, as appropriate. Factors associated with receiving guideline concordant care included receiving a cisplatin-based regimen, being treated in adult oncology compared to pediatric oncology, and solid tumor diagnosis. In Study Three, of the 127 patient records reviewed for the documentation of chemotherapy-induced nausea and vomiting, 75% had prescriber assessment documented and 58% had nursing assessment documented. Of those who had documented assessments by both prescriber and nurse, 72% were in agreement of the presence/absence of chemotherapy-induced nausea and vomiting. After mapping the concept through the United Medical Language System and developing a post-coordinated expression to identify chemotherapy-induced nausea and vomiting in the text, 85% of prescriber documentation and 100% of nurse documentation could be correctly categorized as present/absent. Further descriptors of the symptoms, such as severity or temporality, however, were infrequently reported. Conclusion: In summary, this dissertation provides new knowledge about decision making in cancer care delivery. Specifically, in Study One the researcher describes that clinical decision support, one potential implementation strategy to improve guideline concordant care, is understudied or under published but a promising potential intervention. In Study Two, I identified factors that were associated with receipt of guideline concordant care for CINV, and these should be further explored to develop interventions. Finally, in Study Three, I report on the limitations of the data quality of CINV documentation in the electronic health record. Future work should focus on validating these results on a multi-institutional level.

This thesis covers research around the Medical Emergency Team (MET) system, describing its development, evaluation and other related research that evolved as a result of the MET concept. The basic problem that prompted development of the MET system was related to the inadequate care given to the seriously ill in acute hospitals. This thesis contains background research on some of the reasons why a MET system may be useful, including the limited skills and knowledge of medical training and the sort of acute problems encountered in a hospital at night. Research then describes how the MET system works, including published data on when and how often the team is called, the type of patient the team is called to, the interventions performed by the team, and the outcome of patients on whom a MET was called. At the same time research was being performed around outcome indicators used to measure the effectiveness of the MET system, resulting in the use of cardiac arrests, deaths and unanticipated admission to the Intensive Care Unit (ICU) as common end-points for research in this area. Further research demonstrated that potentially preventable antecedents were common before serious illness The thesis then concentrates on how effective the MET system was in reducing death and serious adverse events. The first study compared a hospital where a MET system had been implemented to two control hospitals and found there was a reduction in admissions to the ICU but after adjustment, not for deaths and cardiac arrests. The second study used a cluster randomised methodology, enrolling 23 hospitals across Australia, comparing the three end-points described above. The study found no difference between both groups. It did highlight some interesting areas around the importance of effective implementation in determining the effectiveness of systems in health. Other publications have described the importance of developing effective ways of caring for the seriously ill outside traditional areas such as ICUs. The MET system, or variations on it, is now implemented in many hospitals in Australia and around the world and there have been two international MET conferences held in North America and international guidelines on the MET concept established.

Video Respite (VR) refers to a series of videotapes designed to engage cognitively impaired individuals so that caregivers can have opportunities for respite. Previous work has evaluated the impact of VR with family caregivers. This study assessed use of VR in special care units (SCUs) for persons with dementia. The foci of the study were 10 SCUs and the individual staff members caring for the residents. The findings suggest VR is more likely to be used in SCUs with relatively higher levels of organization and lower levels of conflict. In addition, resident agitation was found to be significantly lower after VR use. Implications for future evaluation of Video Respite in special care units are discussed. / Graduation date: 1995

The purpose of the present study was to examine the effect of environmental density on the behavior (Disruptive and Nondisruptive) of elderly residents with dementia living on a special care unit. A building project that led to relocation of residents from high density units to units that varied in density (low vs. high) provided a natural context for this study. Disruptive and Nondisruptive behavior are composite variables that together include the full range of behavioral responses. Both are composed of several subvariables. Data were collected using direct behavioral observation using the Environment-Behavior Interaction Code (Stewart & Hiscock, 1992b) and a hand-held computer. The first objective of the study was to examine behavior patterns in relation to density and privacy. This objective was addressed with a quasi-experimental design (Study 1), in which three hypotheses were tested. It was predicted that residents who moved from a high density unit to a low density unit would exhibit a greater reduction in rate of Disruptive behavior (Hypothesis 1) and a greater increase in rate of Nondisruptive behavior (Hypothesis 2), compared to residents in a constant high density condition. It was also predicted that use of Private Time (time spent alone in one's bedroom) would be greater on the low density unit, where residents had private rooms (Hypothesis 3). Results of Study 1 provided support for Hypotheses 1 and 2, in relation to comparisons with the External Comparison Group only. Within subjects analyses provided additional support for Hypothesis 1 (Disruptive behavior). Hypothesis 3 (Private Time) was also supported. The second objective of the study was to explore the perceptions of family and staff caregivers with regard to the effect of the environment on resident behavior. This study was addressed with a qualitative design (Study 2) using the grounded theory method. Participants in Study 2 described the needs of residents with dementia in relation to the physical and social environment, and the outcomes that occurred when these needs were met or not met. (Abstract shortened by UMI.)

HIV/AIDS is a significant social problem impacting on families, communities, the public health sector and greater society. This qualitative study looked at the experiences of social support among volunteer caregivers of people living with AIDS and relationships of trust and solidarity between caregivers and members of the community. KwaZulu-Natal has the highest HIV infection rate in South Africa. This further compounds the burden of care and stigma surrounding caring for people living with HIV/AIDS .This study draws on aspects of social support theory, social capital framework and the theoretical resources of socio-ecological theory more broadly. Methodologically, in-depth interviews were conducted with 10 female volunteer caregivers with a minimum of three months care work experience and Ulin’s thematic analysis was utilized to highlight the salient themes around their experiences of social support. The findings of this study revealed that the burden of care, stigma experienced by the volunteer caregivers and the relationships between the volunteers and community members as well as social networks all played a significant role in the need for the provision of social support to the volunteers. Furthermore, the findings of the study highlighted the social consequences of care work and the need for support in this ambit. The study concluded that social support for the volunteers is severely lacking for the following reasons; there was a complete breakdown of social cohesion between the volunteers and their community; the relationships between the volunteer and surrounding social networks were under strain and as a result had a negative impact on the accessing of social support. Factors such as social trust, social bonding, social bridging and social linking were lacking between the volunteers and the community therefore accessing social support becomes problematic. Poverty is a factor that had a ripple effect on the volunteer and resulted in the urgent need for support in the form of tangible and emotional resources. Volunteerism is an undeniable necessity in the treatment or care of HIV/AIDS patients. The issues around social trust and social networks played a key role in the accessing of social support which ultimately impacted on the efficacy of care provided by the volunteer. The findings highlighted that there was a dire need to mobilize social capital within the KwaNgcolosi community in order to create relationships that would facilitate the social support needed by the volunteer. / Thesis (MMed.)-University of KwaZulu-Natal, Durban, 2009.

The aim of the study was to explore nurses' experiences, attitudes and perceptions regarding the care of patients with the Acquired Immunodeficiency Syndrome (AIDS) before and after the introduction of Anti-Retroviral Therapy (ART) in a rural KwaZulu-Natal hospital .. A secondary aim was to investigate psychosocial stressors that nurses experience and the support they receive in this regard. A qualitative study was conducted and three focus group discussions were conducted before the introduction of ART and five individual interviews were used for in-depth exploration of the health care workers' perceptions of caring for AIDS patients after the introduction of ART. Special attention was paid to nurses' experiences with AI DS patient care and with attention to stress and coping. The AACN Synergy Model was used as a broad theoretical framework for the study to guide the exploration regarding the influence of both nurse and patient characteristics influence the care process within a rural South African context. The findings suggested that before the introduction of ARV-therapy most patients had limited knowledge and understanding of HIV/AIDS disease and its processes. They and other significant others who could be a family member or even friends were marginally involved in the care process. Voluntary Counseling and Testing (VCT) seemed to impact negatively on this situation, and patients were not willing to test and disclose their status to health workers. The knowledge around HIV/AIDS among nurses seemed to be inadequate due to the lack of support and training. They reported being inadequately equipped to deal effectively with caring for their AIDS patients. After the introduction of ARV-therapy, greater involvement of patients on ARV treatment was noted. The participation of significant others in patient management also improved possibly due to their involvement as treatment associates, a requirement of the ART programme. However, the nurses still reported inadequate knowledge not only around AIDS in general but also pertaining ART as well as in the provision of psychosocial support to their patients. The study also revealed that the Synergy Model for patient care, which compares the patient characteristics to nurse competencies can be used to gain insight into patient care and its demands. This model has also suggested weaknesses in nurses' training that need attention. Nurses are expected to use insight into patients needs to improve their competencies to meet the challenges of AIDS patient care and to fulfill their mandate as the key stakeholders on patient care. Lazarus and Folkman's (1984) views on stress and coping were useful in identifying the nurses' coping strategies. The study highlighted specific areas in need of intervention. Formal and informal teaching for both nurses and the patients on HIV and AIDS management needs to be introduced. Patients and families' involvement in decision making and HIV/AIDS disease management should be expanded. HIV counseling and all its components, which are pre- and post-counseling as well as on-going disease management counseling needs to be re-evaluated. There is a need to advocate for a more patient orientated counseling rather than test orientated counseling. Psychosocial support to nurses should be a priority to help them cope with their stressful AIDS caring work. Advocacy for a worker friendly Employee Assistance Program (EAP) should be encouraged by the managers of the institution. Intra-disciplinary and inter-disciplinary communication needs to be improved through innovative strategies. The address of the AI DS stigma within the healthcare system remains a priority and this aspect needs to be incorporated at different levels i.e. basic training, in counseling and within the psychosocial support efforts directed at nurses. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2009.

The burden of caregiving is alarmingly high in South Africa, where one in every three people admitted in hospitals, is HIV positive. A great number of AIDS patients end up being cared for at home by their families, but mostly by volunteer caregivers. The conditions in which caregivers work under, leave much to be desired, hence work related conditions are a probable cause for high stress levels among volunteer caregivers of people living with HIV/AIDS. This study sought to investigate stress factors of volunteer caregivers of people living with HIV/AIDS and the influence of social capital on high stress levels. Within a South African caregiving setting, social capital influence has not been explored. In a culture where silence and stigmatisation of people living with HIV/AIDS and caregivers is high, this study tries to locate participation of close friends and family, local organizations and government in dealing with caregiving work and support. The study was conducted in 13 semi rural communities in Durban KwaZulu-Natal, South Africa. A survey was used to collect data, and analysis was conducted using quantitative methods. The sample comprised of 127 women from an organization called Community Outreach Centre. The greater (92.2%) of the total sample reported above 50% of stress levels. The findings indicated that caregiving work require urgent support from organizations and government. It was also evident that organizations within communities do not work together nor support each other in dealing with caregiving problems. Contrary to the existing literature, the results also showed that the more social capital elements such as social cohesion and social action at a bridging level increased, the more stressed volunteer caregivers became. / Thesis (M.Soc.Sci.)-University of KwaZulu-Natal, Durban, 2010.

Human Immunodeficiency Virus (HIV) infection and Auto-Immune Deficiency Syndrome (AIDS) have spread globally during the past twenty-eight years and 67% of people living with HIV live in sub-Saharan Africa. HIV and AIDS are now the leading cause of death in this region. Worldwide, it is the fourth biggest killer. Nurses in health institutions in South Africa face challenges as result of increased number of very sick and terminally ill patients who are admitted to the hospital due to HIV and AIDS epidemics. Workloads have increased with no concomitant increase in number of staff to care for the patients. Aim: This study aims to identify dynamics of care of professional patients with HIV and AIDS by nurses and make recommendations that will deal with these problems. Methods: A qualitative study was conducted with the study population drawn from professional nurses who were involved in the care of patients with HIV and AIDS in the medical wards at Ngwelezana Hospital for at least five years. One focus group discussion was also conducted. The sample was selected purposively. Results: The study revealed many issues affecting the care nurses gave to patients with HIV and AIDS and the personal challenges (physical and emotional) they faced in the course of their work. Amongst these are contextual challenges which pertained mainly to health system issues- lack of institutional support and incentives, heavy workload with concomitant increase in number of patients attended to by nurses, training needs of nurses and multidisciplinary team work. Nurses had to deal with personal challenges such as helplessness, frustration, anger, death anxiety, physical and emotional stress. However, there were positive experiences such as empathy and self-actualisation in being able to care for terminally ill patients and seeing some of them get better with treatment. Recommendations: These include the need to address the training needs of nurses about management of HIV and AIDS, institutional support for nurses, critical incident debriefing and community awareness. / Thesis (M.Med.)-University of KwaZulu-Natal, Durban, 2010.

The excessive use of chemical and physical restraints in intermediate care facilities has been a subject of study since the early eighties, and has produced several explanations for why restraint use continues to be practiced. One of the primary reasons often cited is that restraints are used to control "problematic behavior" commonly exhibited by a person suffering from dementia. The focus of the proposed project is to analyze whether restraint practices for residents with moderate to severe dementia differ between Special Care Units and integrated units within long term care facilities. The main objective of the study is to demonstrate whether seniors with dementia residing in Special Care Units will be less likely to encounter physical and chemical restraints than demented residents living within an integrated facility. This objective explores the assumption that Special Care Units were designed to meet the needs of residents with dementia, and therefore, care providers should be more accepting of deviant behaviours. The findings revealed that the more severe the level of memory impairment the more likely a resident would be placed in a Special Care Unit. Once located in these Special Care Units, residents were more likely to experience physical and chemical restraints than their counterparts in integrated care units.

Chantal Mouffe has proposed a theory of political engagement or “citizenship” that rejects fixed, essential definitions to “the political”. With her pluralistic, non-essentialized political subject, she hopes for a means by which different political struggles can be linked together rather than ordered hierarchically or exclusively. Here citizens are associated in distinct but related struggles, rather than by legal status or community membership. A crucial point in her argument is that political theorists must look for new “spaces” of politics. Since she never expands on this call, we are left with little more than spatial metaphors that fix the locations where citizenship might be found. Political theory typically plots three separate spheres to describe people’s lives: the state, civil society, and the family. By spatializing these metaphorical locations I have taken up her call and explored the emergence of citizenship across these spatialized social relations through an ethnography on AIDS politics in Vancouver, Canada. For each allegedly discrete space in political theory, I note an ongoing restructuring that affects and is affected by the articulation of citizenship with the changes in social relations in place. These restructurings suggest that fixed, essentialized characterizations of space must also be rejected. I sketch the considerable overlap between social relations of state, family, and civil society in locations across Vancouver’s AIDS politics. Radical civil disobedience failed because activists failed to understand the overlap of state and civil society through AIDS service organizations. Within those agencies, political engagement is caught between grassroots community orientations (civil society) and the emergence of a large, rapidly bureaucratizing service system attached to the state. Volunteers who provide all manner of support (from social work to kinship) for people living with AIDS likewise complicate any clearcut distinction between state and family. The overlap of the family with civil society is illustrated by the Vancouver display of the AIDS Quilt. It was at once a fundraising event held in civil society, yet it was also a familial space: allowing families and friends to grieve and mourn their dead. Spatial overlaps enabled (and also constrained) citizenship, as Mouffe defines it. These hybrid spaces articulate de-centered citizens with the ongoing restructurings of state, civil society, and family that are concurrent to the AIDS epidemic. Consequently, I conclude that future work on radical democratic citizenship consider the contexts in which the citizen engages in political struggle.