Adolescents with cystic fibrosis (CF) face unique stressors that require effective coping strategies. Although research suggests that coping may be an important moderator of adjustment to stress, previous studies have utilized generic coping measures that are not specific to the disease or context. Using the Role-Play Inventory of Situations and Coping Strategies (RISCS), a context-specific coping measure for adolescents with CF, the current study examined whether coping efficacy moderated the relationship between disease-related stress and health-related quality of life. Additionally, this study investigated the impact of two family-based behavioral interventions on adolescents’ coping skills: Behavioral Family Systems Therapy (BFST) and the Family Education Program (FEP). Although no direct effects of coping on HRQOL at baseline were found, resulted showed that effective coping buffered the negative effects of disease severity and stressor frequency on HRQOL in several domains. In addition, some evidence indicated that at the most severe end of the severity continuum, there may be thresholds at which effective coping strategies no longer exert their beneficial effects. Longitudinal models revealed that improvements in coping skills were associated with positive changes in HRQOL in different domains, depending upon treatment group. These findings highlighted the utility of using context-specific, sensitive coping measures when examining the moderating effects of coping, and the importance of identifying adolescents with poor coping skills and providing tailored interventions.

Chronic disease is the largest cause of death in the world. Yet little is known about how globalization forces affect the body and the experience of someone who is chronically ill. The need for specialized knowledge of subjective data is significant as it will assist us to improve our understanding and develop stronger nursing practices for people who are chronically ill. The purpose of this research is to understand the effect that globalization forces have on the personal experience of people living with chronic illnesses. People living with chronic illness from Canada and Colombia are participants in the study. The following research questions guided the study “What is it like to live with a chronic illness in the context of contemporary globalization forces? How do these political, economical and social forces affect the body of the chronically ill? Are experienced difficulties similar or different in a middle-income country as compared to a high-income country? The methodology for the study follows an interpretive inquiry approach using a critical hermeneutic phenomenological method. Hermeneutic phenomenology explores the various dimensions of human experience in human situations such as embodiment, spatiality, relationality and temporality. Critical pedagogy as a theoretical perspective invoking the work of Paulo Freire and Enrique Dussel is used to examine emerging findings in the context of globalization and resulting global inequities. This dissertation presents the experience of people who are chronically ill including access to health care, respect, compassion, social, political and legal exclusion, and calls for understanding and action on the part of health care professionals, policy makers and society. The findings urge us to move from merely acknowledging the difficulties people living with chronic illness endure in an age of globalization to action to bring about health care, social, and political reform through a process of conscientization and mutual transformation.

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The United States Latino population has experienced unprecedented growth in the past several decades. Despite these growing numbers there has been relatively little research that explores how exposure to negative life events and chronic strains affects the physical health outcomes of Latinos. This thesis examines the extent to which traumatic life events and chronic strains affect the physical health outcomes of foreign-born and native-born Mexican-origin individuals (age 45 an older) residing along the U.S./Mexico border. Results from the multivariate analysis show that there is no direct association between traumatic life events and self-reported health. However, chronic strains were found to negatively impact the well-being of both foreign-born and native-born groups. Finally, the hypothesis suggesting that foreign-born respondents would fare better in terms of health (Latino/Hispanic paradox) compared to their native-born counterparts is not supported, with the results shown to be consistently in the opposite direction. Future research is needed on the interplay between different types of stressors and physical health outcomes among Mexican-origin individuals.

Background: Inflammatory bowel disease (IBD) is an umbrella term for ulcerative colitis and Crohn's disease. These are characterized by a chronic inflammation of the intestinal mucosa. Living with chronic illness meant that life changed significantly. Quality of life was affected for these individuals and was stressful in their lives.   Aim: The aim was to describe the experiences of living with inflammatory bowel disease.   Method: A qualitative literature review was chosen to analyze articles that were related to the aim of this study.   Results: Based on the chosen articles five themes were created; Commuting between hope and fear, symptoms of the disease and medication become everyday focus, struggling with  the new identity, desire to control the disease- do I control my illness or does it control me and social relationships are affected.   Conclusion: Inflammatory bowel disease is a distressing disease and can cause limitations in social life due to lack of knowledge by others about the disease. The affected felt a loss of control in their life due to the difficulty in managing the symptoms. They experienced a constant struggle and mixed emotions, such as anxiety, depression, stress, and denial of the disease, trying to feel like a healthy person.

Participation in decision-making and inclusion in the important matters of one’s life are upheld as measures of equality and indicators of the moral status of individuals in liberal democratic societies. To some extent, the status of children in western societies is a contested question, and hence, the nature of children’s contributions to decisions is a matter of debate. Evidence suggests that in spite of an apparent societal commitment to children’s participation in the important matters of their lives, children tend to be excluded from decisions in which they might reasonably be involved. This project investigated the participation of one group of children—chronically ill school-age children— in decisions related to their health care. Adopting interpretive description as methodology, data were collected and analyzed through interviews and participant observation with 31 chronically ill children (ages 7 to 12 years) and their parents, as well as through interviews with health care providers. In this study, children’s participation in health care decisions emerged as a complex activity, deeply embedded in relationship and history. Participation varied within two key domains: children’s opportunities and abilities to formulate and make known their intentions and desires in decisional contexts (the resonance of children’s voices); and the standing achieved by children’s views within decisional processes (the relevance of children’s voices). The interplay of adult authority and children’s agency at the nexus of the resonance and relevance of children’s voices created certain participatory spaces, depicted as moral and social realms variously characterized by children’s silence, children’s tangible expression, adult imposed authority, or adult assumed responsibility. The findings of this study demonstrate a need to re-think our concept of children’s participation, and point to the importance of developing a more relational and contextual understanding of how chronically ill children may contribute to important matters in their lives. The findings also support a view that nurses and other health care providers hold certain responsibilities to critically question the relationships and structures that comprise children’s health care encounters, toward a goal of creating conditions where possibilities for children’s participation are optimized.

Introduction Bacterial biofilms have been implicated in the pathogenesis of Chronic Rhinosinusitis (CRS). This thesis consists of a number of separate studies. The results of each study were designed to help provide an evolution of knowledge that could be applied to our subsequent investigations on the topic of bacterial biofilms and chronic rhinosinusitis. In vitro studies were utilized to document the capacity of CRS bacteria to form biofilms as well as to investigate the efficacy of various antimicrobials at high concentrations. Additionally, an in vivo sheep model was developed to examine different biofilm detection techniques. Finally, a study of CRS patients was conducted to investigate the incidence of biofilm related sinus disease. Methods Our in vitro studies used 96 well crystal violet microtiter plate assays to determine the biofilm growth characteristics of S.aureus isolated from patients with CRS. Established biofilms were then subjected various antimicrobial agents, and the degree of biofilm reduction calculated to examine their potential for sinus biofilm treatment. A sheep sinusitis model involved performing endoscopic sinus surgery, occlusion of frontal sinus ostia and the introduction of bacteria. Mucosal specimens were subsequently examined for the presence of bacterial biofilms using transmission electron microscopy (TEM), scanning electron microscopy (SEM) and confocal scanning laser microscopy (CSLM). CSLM was also used in a prospective study to document the presence bacterial biofilms on the mucosa of patients with CRS compared to controls. Results The findings of in vitro experiments revealed that not all isolates were capable of forming biofilms. Of the antibiotics tested, only Mupirocin was capable of reducing biofilm mass by 90% in all isolates. The animal model showed considerable variation in biofilm detection rates. The CSLM biofilm detection rate was 100% in obstructed sinuses with bacteria introduced, whereas TEM detected only 66%. Both these objective measures failed to identify biofilms in control groups. SEM found biofilms in all experimental groups including controls. CSLM analysis of CRS patients found Bacterial biofilms in 44% and no biofilms in controls. Conclusion The demonstration of biofilms in the sheep model for sinusitis and biofilms on the mucosal specimens of patients with CRS, and the ability of bacteria in CRS to form biofilms in vitro, further supports the hypothesis that biofilms play a role in the pathogenesis of CRS. CSLM is the modality of choice in documenting the presence of bacterial biofilms on sinus mucosal surfaces due to the inherent flaws of sampling error and subjectivity of TEM and SEM. Finally, CRS is a multi-factorial disease, topical Mupirocin via nasal irrigation may be a therapeutic option in patients with likely S.aureus biofilms. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1367183 / Thesis (M.S.) - University of Adelaide, School of Medicine, 2009

This is a study of quantitative electroencephalographic (QEEG) comodulation analysis, which is used to assist in identifying regional brain patterns associated with Chronic Fatigue Syndrome (CFS) compared to an EEG normative database. Further, this study investigates EEG patterns in depression which is found to be a highly comorbid condition to CFS. The QEEG comodulation analysis examines spatial-temporal cross-correlation of spectral estimates in the individual resting dominant frequency band. A pattern shown by Sterman and Kaiser (2001) and referred to as the Anterior Posterior Dissociation (APD) discloses a significant reduction in shared functional modulation between frontal and centro-parietal areas of the cortex. Conversely, depressed patients have not shown this pattern of activity but have disclosed a pattern of frontal Hypercomodulation localized to bilateral pre-frontal and frontal cortex. This research investigates these comodulation patterns to determine whether they exist reliably in these populations of interest and whether a clear distinction between two highly comorbid conditions can be made using this metric. Sixteen CFS sufferers and 16 depressed participants, diagnosed by physicians and a psychiatrist respectively were involved in QEEG data collection procedures. Nineteen-channel cap recordings were collected in five conditions: eyes-closed, eyes open, reading task-one, math computations task-two, and a second eyes-closed baseline. Five of the 16 CFS patients showed a clear Anterior Posterior Dissociation pattern for the eyes-closed resting dominant frequency. However, 11 participants did not show this pattern of dysregulation. Examination of the mean 8-12 Hz band spectral magnitudes across three cortical regions (frontal, central and parietal) indicated a trend of higher overall alpha levels in the parietal region in CFS patients who showed the APD pattern compared to those who did not show this pattern. All participants who showed the APD pattern were free of medication, while the majority of those absent of this pattern were using antidepressant medications. For the depressed group, all of which were medication free, 100 % of the depressed group showed a frontal Hypercomodulation pattern. Furthermore, examination of the mean 8-12 Hz band spectral magnitudes across three cortical regions disclosed a trend of high frontal alpha and a left/right asymmetry of greater voltages in the left frontal cortex. Although these samples are small, it is suggested that this method of evaluating the disorder of CFS holds promise. The fact that this pattern is not consistently represented in the CFS sample could be explained by the possibility of subtypes of CFS, or perhaps comorbid conditions. Further, the use of antidepressant medications may mask the pattern by altering the temporal characteristics of the EEG. This study, however, was able to demonstrate that the QEEG was able to parse out the regional cerebral brain differences between CFS and depressed group.

Protein-energy wasting (PEW) is commonly seen in patients with chronic kidney disease (CKD). The condition is characterised by chronic, systemic low-grade inflammation which affects nutritional status by a variety of mechanisms including reducing appetite and food intake and increasing muscle catabolism. PEW is linked with co-morbidities such as cardiovascular disease, and is associated with lower quality of life, increased hospitalisations and a 6-fold increase in risk of death1. Significant gender differences have been found in the severity and effects of several markers of PEW. There have been limited studies testing the ability of anti-inflammatory agents or nutritional interventions to reduce the effects of PEW in dialysis patients. This thesis makes a significant contribution to the understanding of PEW in dialysis patients. It advances understanding of measurement techniques for two of the key components, appetite and inflammation, and explores the effect of fish oil, an anti-inflammatory agent, on markers of PEW in dialysis patients. The first part of the thesis consists of two methodological studies conducted using baseline data. The first study aims to validate retrospective ratings of hunger, desire to eat and fullness on visual analog scales (VAS) (paper and pen and electronic) as a new method of measuring appetite in dialysis patients. The second methodological study aims to assess the ability of a variety of methods available in routine practice to detect the presence of inflammation. The second part of the thesis aims to explore the effect of 12 weeks supplementation with 2g per day of Eicosapentaenoic Acid (EPA), a longchain fatty acid found in fish oil, on markers of PEW. A combination of biomarkers and psychomarkers of appetite and inflammation are the main outcomes being explored, with nutritional status, dietary intake and quality of life included as secondary outcomes. A lead in phase of 3 months prior to baseline was used so that each person acts as their own historical control. The study also examines whether there are gender differences in response to the treatment. Being an exploratory study, an important part of the work is to test the feasibility of the intervention, thus the level of adherence and factors associated with adherence are also presented. The studies were conducted at the hemodialysis unit of the Wesley Hospital. Participants met the following criteria: adult, stage 5 CKD on hemodialysis for at least 3 months, not expected to receive a transplant or switch to another dialysis modality during the study, absence of intellectual impairment or mental illness impairing ability to follow instructions or complete the intervention. A range of intermediate, clinical and patient-centred outcome measures were collected at baseline and 12 weeks. Inflammation was measured using five biomarkers: c-reactive protein (CRP), interleukin-6 (IL6), intercellular adhesion molecule (sICAM-1), vascular cell adhesion molecule (sVCAM-1) and white cell count (WCC). Subjective appetite was measured using the first question from the Appetite and Dietary Assessment (ADAT) tool and VAS for measurements of hunger, desire to eat and fullness. A novel feature of the study was the assessment of the appetite peptides leptin, ghrelin and peptide YY as biomarkers of appetite. Nutritional status/inflammation was assessed using the Malnutrition-Inflammation Score (MIS) and the Patient-Generated Subjective Global Assessment (PG-SGA). Dietary intake was measured using 3-day records. Quality of life was measured using the Kidney Disease Quality of Life Short Form version 1.3 (KDQOL-SF™ v1.3 © RAND University), which combines the Short-Form 36 (SF36) with a kidney-disease specific module2. A smaller range of these variables was available for analysis during the control phase (CRP, ADAT, dietary intake and nutritional status). Statistical analysis was carried out using SPSS version 14 (SPSS Inc, Chicago IL, USA). Analysis of the first part of the thesis involved descriptive and bivariate statistics, as well as Bland-Altman plots to assess agreement between methods, and sensitivity analysis/ROC curves to test the ability of methods to predict the presence of inflammation. The unadjusted (paired ttests) and adjusted (linear mixed model) change over time is presented for the main outcome variables of inflammation and appetite. Results are shown for the whole group followed by analyses according to gender and adherence to treatment. Due to the exploratory nature of the study, trends and clinical significance were considered as important as statistical significance. Twenty-eight patients (mean age 61±17y, 50% male, dialysis vintage 19.5 (4- 101) months) underwent baseline assessment. Seven out of 28 patients (25%) reported sub-optimal appetite (self-reported as fair, poor or very poor) despite all being well nourished (100% SGA A). Using the VAS, ratings of hunger, but not desire to eat or fullness, were significantly (p<0.05) associated with a range of relevant clinical variables including age (r=-0.376), comorbidities (r=-0.380) nutritional status (PG-SGA score, r=-0.451), inflammatory markers (CRP r=-0.383; sICAM-1 r=-0.387) and seven domains of quality of life. Patients expressed a preference for the paper and pen method of administering VAS. None of the tools (appetite, MIS, PG-SGA, albumin or iron) showed an acceptable ability to detect patients who are inflamed. It is recommended that CRP should be tested more frequently as a matter of course rather than seeking alternative methods of measuring inflammation. 27 patients completed the 12 week intervention. 20 patients were considered adherent based on changes in % plasma EPA, which rose from 1.3 (0.94)% to 5.2 (1.1)%, p<0.001, in this group. The major barriers to adherence were forgetting to take the tablets as well as their size. At 12 weeks, inflammatory markers remained steady apart from the white cell count which decreased (7.6(2.5) vs 7.0(2.2) x109/L, p=0.058) and sVCAM-1 which increased (1685(654) vs 2249(925) ng/mL, p=0.001). Subjective appetite using VAS increased (51mm to 57mm, +12%) and there was a trend towards reduction in peptide YY (660(31) vs 600(30) pg/mL, p=0.078). There were some gender differences apparent, with the following adjusted change between baseline and week 12: CRP (males -3% vs females +17%, p=0.19), IL6 (males +17% vs females +48%, p=0.77), sICAM-1 (males -5% vs females +11%, p=0.07), sVCAM-1 (males +54% vs females +19%, p=0.08) and hunger ratings (males 20% vs females -5%, p=0.18). On balance, males experienced a maintainence or reduction in three inflammatory markers and an improvement in hunger ratings, and therefore appeared to have responded better to the intervention. Compared to those who didn’t adhere, adherent patients maintained weight (mean(SE) change: +0.5(1.6) vs - 0.8(1.2) kg, p=0.052) and fat-free mass (-0.1 (1.6) vs -1.8 (1.8) kg, p=0.045). There was no difference in change between the intervention and control phase for CRP, appetite, nutritional status or dietary intake. The thesis makes a significant contribution to the evidence base for understanding of PEW in dialysis patients. It has advanced knowledge of methods of assessing inflammation and appetite. Retrospective ratings of hunger on a VAS appear to be a valid method of assessing appetite although samples which include patients with very poor appetite are required to confirm this. Supplementation with fish oil appeared to improve subjective appetite and dampen the inflammatory response. The effectiveness of the intervention is influenced by gender and adherence. Males appear to be more responsive to the primary outcome variables than females, and the quality of response is improved with better adherence. These results provide evidence to support future interventions aimed at reducing the effects of PEW in dialysis patients.

Thesis (MEd (Distance Education))--Deakin University/University of South Australia, 1993