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.)

Thesis (M. Nurs.)--University of Hong Kong, 2006.

Thèse : Helsinki : 1987. / Finlande. Includes bibliography.

No description available.

No description available.

Almost everyone experiences an incident, illness, or concern that requires clinical advice or assistance. Most persons obtain the desired care and renew their daily activities. Some people, however, appear to be (medical) problem-prone, wellness-resistant or reinforced by illness sequelae. Individuals who maintained illness behaviors are often called, for example, chronic pain, asthma, or psychiatric patients by caregivers who focus on diagnoses. Some patients may be viewed as primarily chronic, with specific diagnoses considered secondary. Chronicity is here defined as a measure of individual, situation, exposure, and provider interaction outcomes. Independent of disease processes, chronicity-producing interactions often predict inappropriate and atypical medical utilization patterns. The assessment of chronicity, its precursors, and dynamics may identity high risk person, situation, provider, and environment combinations and permit more effective and relevant prevention and treatment strategies. The study patient chronicity, the Pre-Assistance Questionnaire (PAQ) was developed with 320 items on medical, personal, and situational topics. PAQ responses from 60 medical and 40 psychiatric VA outpatients were correlated with three estimators of patient chronicity: PAQ totals (from an empirically-derived key), clinicians' subjective ratings of patients' chronicity, and indices of subjects' 2 year use of VA medical center resources. PAQ totals correlated significantly with 240 items, medical usage with 119, and clinicians' ratings with 100. For replication, a 40 item short form was given to 120 medical and 80 psychiatric outpatients. Thirty-four items correlated significantly with two of the three measures, 26 with all three. The short form demonstrated high reliability (alpha = .91; test-retest reliability = .90; split-half reliability = .89). PAQ totals, chronicity ratings, and use indices showed no significant differences across from administrations although the psychiatric patients scored significantly higher (more chronic) on all measures. The findings support a general chronicity construct and suggest many applications from the screening of potential employees to the development of specific treatment plans matched to particular PAQ patterns. The major message, however, is that public health, medical, psychological, and sociological constructs may be integrated into a comprehensive model of medical utilization patterns that provides views of illness, wellness, and health care delivery and assessment.

This thesis is concerned with families and chronic illness in childhood. The specific focus of the study is the nursing contribution to support of the family. A longitudinal study of the experience of four families caring for a child with cystic fibrosis was carried out using the ethnographic approach. Analysis of the four case studies provides insight to the effect of cystic fibrosis on each family member and on family interaction. The psychosocial transition by which the families moved from seeing themselves as healthy families to accepting the reality of a long-term health problem is described. The complexity of the effect of the genetic aspects and the grim prognosis is explored. The importance of finding meaning in suffering, the experiences of crisis and the chronic burden of care during the long-term adaptive stage of the illness are described. The support networks used by the families, and the nurse's contribution to that support are analysed. The research arose from practice and raises issues for nursing - issues relating to the level of interpersonal skill and the emotional investment required. The theoretical underpinning of nursing interaction is elaborated and the utility of systems theory in the understanding of the nursing situation is discussed. The importance of synchrony in the parents' adaptation to the child's illness is an emergent theme. The implications of the findings for nursing practice, management and research are discussed. The case for the development of a concept of family nursing to meet contemporary health care needs is argued.

There is no abstract available for this dissertation. / Department of Educational Psychology