Thesis (M.A.)--University of Canterbury, 2006. / Typescript (photocopy). Includes bibliographical references (leaves 78-87). Also available via the World Wide Web.

Thesis (Ph. D.)--University of Texas at Austin, 1999. / Vita. Includes bibliographical references (leaves 112-118). Available also in a digital version from Dissertation Abstracts.

published_or_final_version / Psychiatry / Doctoral / Doctor of Philosophy

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Dependency is defined as authentic or pathological and is seen as a component important to the treatment of patients with chronic illness. It is hypothesized that a significant portion of ecology patients will meet the criteria for pathological dependence and differ on psychological and physiological parameters from those who do not. This study strongly supports the first two hypotheses but does not find that the two groups differ physiologically. One hundred eleven variables are surveyed. Fifty-two show significant differences between the groups and 29 are significant at greater than the .0001 level. A discriminant analysis was used to determine the least number of orthogonal variables that best discriminate between the groups. These are MMPI Scales 8, 3, subscale Ma2, employment status, and early childhood illness.

Online health communities (OHCs) have been increasingly popular among patients with chronic or life-threatening illnesses for the exchange of social support. Contemporary research of OHCs relies on methods and tools to handle analytics of massive user-generated content at scale to complement traditional qualitative analysis. In this thesis, we aim at advancing the area of research by providing computational tools and methods which facilitate automated content analysis, and by presenting applications of these tools to investigating member characteristics and behaviors. We first provide a framework of conceptualization to systematically describe problems, challenges, and existing solutions for OHCs from a social support standpoint, to bridge the knowledge gap between health psychology and informatics. With this framework in hand, we define the landscape of online social support, summarize current research progress of OHCs, and identify research questions to investigate for this thesis. We then build a series of computational tools for analyzing OHC content, relying on techniques of machine learning and natural language processing. Leveraging domain-specific features, our tools are tailored to handle content analysis tasks on OHC text effectively. Equipped with computational tools, we demonstrate how characteristics of OHC members can be identified at scale in an automated fashion. In particular, we build up multi-dimensional descriptions for patient members, consisting of what topics they focus on, what sentiment they express, and what treatments they discuss and adopt. Patterns of how these member characteristics change through time are also investigated longitudinally. Finally, relying on computational analytics, members' behaviors of engagement such as debate and dropping-out are identified and characterized. Studies presented in this thesis discover static and longitudinal patterns of member characteristics and engagement, which are potential research hypotheses to be explored by health psychologists and clinical researchers. The thesis also contributes to the informatics community by making computational tools, lexicons, and annotated corpora available to facilitate future research.

Objectives: The purpose of this study is to advance the understanding of secondary conditions experienced by persons aging with the long-term disabilities of polio and rheumatoid arthritis and the consequences of these declines in health and function on disability bed days. Additionally, it explores the effects of the timing and severity of onset of disability characteristics on the frequency and consequences of secondary conditions. A life course conceptual framework with the Institute of Medicine’s model of disablement is used to frame and anchor disability and life events. Methods: In-depth structured in-home interviews were conducted on 216 individuals with polio and 186 individuals with rheumatoid arthritis. They consisted of objective and subjective self-reports of current status and prior condition. The survey was a regional crosssectional, group comparison design with a cross-sequential sampling and data analytic framework. Scale development for data reduction was utilized to obtain parsimonious measures for the models. Linear regression was then performed to test the models for three outcome variables (number of chronic secondary conditions, increases in functional limitations and number of disability bed days in six months) in a theorized order for the polio and RA samples individually. Results: There was partial support for within-sample hypotheses for both polio and rheumatoid arthritis regarding interrelationships and disability bed days in past six months. No significant differences were found across subsamples for the effects of timing and severity of onset of disability characteristics, predicting chronic secondary conditions, predicting increase in functional limitations, and the number of disability bed days in six months. Similarities were found between the two samples when examining subgroup predictors on the three outcomes above. Chronic secondary conditions predicted (p<.05 for both subsamples) increase in functional limitations and increase in mobility was a significant predictor (p<.001 for both subsamples) of increase in functional limitations. Discussion: There were limited findings for these data. Judgment must be withheld with respect to the hypotheses. The analyses did not yield enough predictive strength to make comparisons possible across subsamples. Likewise, in examining similarities, only general, descriptive statements could be made. The subjective nature of disability is an immense challenge in cross disability research for comparability within disabilities and across disabilities.

The management of chronic diseases is described as the “health challenge of the 21st century” by the World Health Organization. Patients’ active role in managing their illness is considered, by many, as central in addressing this challenge. This study explored and described, through scleroderma patients’ own perceptions and understanding, their commitment to illness management, including how they were involved in dealing with their illness and how they learned to do so. The role of social interactions, in particular, support groups, in this process was also investigated. Using a mixed-methods approach, 201 patients were surveyed, and 25 in-depth interviews were conducted. The quantitative results of this study indicated that 64% of patients were committed in managing their illness by being highly active in dealing with their illness. An increase in activation was associated with longer disease duration in the first decade of illness. Additionally, the patients with high social support were more active. The qualitative findings showed patients engaged with various types of work to mitigate the physical, emotional, psychological, relational, and financial impact of the illness. In doing so, patients employed four problem-solving strategies that they had learned by confronting problems in daily lives. These strategies were at the heart of their incidental and tacit learning of how to manage their illness. Only 32% of patients participated in support groups. Support group participants showed higher activation and considered these groups as providing support, learning opportunities, and venues to help other patients. This study indicates that patients’ commitment to management of their illness, far from being a static characteristic of patients, is a spectrum where patients are engaged in a process of complex negotiation with multiple needs of their illness, in tandem with their illness trajectory. Illness uncertainty, learning, and strategies to solve problems in managing the illness frame patients’ commitment and engagement. A preliminary model delineating these elements is provided.

This portfolio documents an investigation of both parent and educator perspectives of managing a chronic illness at school with the aim of developing a framework to ensure that students with chronic illness have equitable access to the same educational outcomes as their healthy peers. This study provides an in-depth exploration of a number of facets of the impact of having a chronic illness, including social, emotional, cognitive and physical aspects. The use of both parent and teacher perspectives provides insights into the realities of having a child with chronic illness at school, and offers some understandings of the risks and challenges parents face as they relinquish care of their ill child into the hands of educators. It also examines the role of educators as they assume much of the responsibility for providing educational, social and emotional support for these students, as well as monitoring their medical needs and health status whilst at school. The evidence from research in the field of child chronic illness suggests that students with chronic illness are at risk academically, emotionally and socially. The effectiveness of any strategy that aims to achieve equity in participation and outcomes for this group of students will depend upon understanding the complex factors that impact on students with chronic illness at school such as absenteeism, relationships with peers and individual resilience. This study addresses the research questions: What are the concerns of parents, educators and students with chronic illness in the educational context? What strategies are consistently being identified as effective in supporting students with a chronic illness at school? And what are the barriers to chronically ill students accessing educational services? Two, two part questionnaires were used to elicit responses from parents and educators of students with chronic illness. The parent respondents consisted of 121 parents of students with chronic illness attending Department of Education schools across NSW, Australia. The teacher respondents consisted of 111 teachers of students with chronic illness in Department of Education schools across NSW. The insights that emerged from the research suggest that the needs of this group of students remain unrecognised and under-resourced. Major findings indicate that many students with chronic illness have high levels of absenteeism, are underachieving academically, have difficulties keeping up and catching up with missed school work, are challenged in their relationships with their peers, and their medical needs are not recognised nor resourced adequately. Teachers of students with chronic illness are inadequately trained, and lack the time and resources to meet the individual needs of these students. The results demonstrated that students with chronic illness are not accessing educational services in the same ways as their healthy peers. The findings of this study suggest schools can make a difference to how well a student and a family cope with chronic illness. The provision of appropriate support, resources and the demonstration of positive attitudes by school communities can foster an environment that facilitates the academic and social growth of the student. The study includes recommendations in the areas of: building communication between home, school and medical professionals; maintaining academic achievement; building peer relationships; managing student medical needs; supporting students returning to school; reducing absenteeism; and supporting emotional health of student and family. The findings of this study have raised an awareness of the needs of students with chronic illness at school, and identified strategies for their support and inclusion. The findings also provide a framework for the provision of educational services for students with chronic illness. Hence, this portfolio represents an exploration of the journey much traveled by parents and educators of students with a chronic illness, with the intent of raising awareness of their needs, and providing direction for policy makers in the field of education, to ensure that students with chronic illness have equitable access to the same educational outcomes as their healthy peers. / Doctor of Education (Ed.D.)