Tyrimo tikslas – išsiaiškinti, kurios asmenybės savybės įtakoja pozityvius asmens pokyčius, susirgus depresija ar cukrinio diabeto II tipu. Tyrime dalyvavo 228 respondentai, sergantys cukriniu diabetu arba depresija, iš kurių 183 anketos buvo tinkamos tolesniems skaičiavimams. Tarp cukriniu diabetu sergančiųjų buvo 21 (18,8 procentai) vyras ir 91 (81,3 procentai) moteris: amžiaus vidurkis 51,17 +/ - 14,648 metai. Depresija sergančiųjų buvo 71, iš kurių 26 (36,6 procentai) vyrai ir 45 (63,4 procentai) moterys: amžiaus vidurkis 46,52 +/ - 14,249 metai. Apklaustos dvi grupės žmonių: viena – sergantys depresija ir besigydantys Žiegždrių psichiatrijos ligoninės depresijos skyriuje, kiti – sergantys cukrinio diabeto II tipu ir besilankantys cukrinio diabeto draugijose, „Aronija“, „Insula“. Naudotos metodikos: LOT-R, Rosenbergo savigarbos, bendra saviveiksmingumo, atsparumo 30 teiginių, atsistatymo, suvoktos naudos skalės. Tyrimo rezultatai parodė, jog asmenybės savybės labiau įtakoja pozityvų požiūrį į ligą nei sociodemografiniai rodikliai: cukrinio diabeto grupėje pozityvų požiūrį į ligą prognozuoja konstanta, atsistatymas ir amžius. Tuo tarpu depresijos grupėje pozityvų požiūrį į ligą prognozuoja konstanta ir amžius. Konstanta, neigiamas savigarbos rodiklis, teigiami atsistatymo ir amžiaus rodikliai prognozuoja pozityvų požiūrį į ligą, neišskiriant lėtinės ligos tipo. Cukrinio diabeto grupėje aukštesni savigarbos rodikliai siejasi su neigiamais dvasingumo rodikliais, aukštesni... [toliau žr. visą tekstą] / The aim of the study was to ascertain which personality features influence positive person‘s changes in groups of depression and diabetes II type. The subjects of the study were people positive attitude toward their chronic illness: diabetes or depression. There participated 228 respondents, but only 183 questionnaire form were available for continuing processing. 21 (18,8 percent) men and 91 (81,3 percent) women were in diabetes group. 51,17 +/ - 14,648 year was their average of age. 26 (36,6 percent) men and 45 (63,4 percent) women were in depression group. 46,52 +/ - 14,249 year was their average of age. Persons with diabetes illness were from diabetes association „Aronija“ and „Insula“ in Kaunas. Persons with depression illness were from Žiegždriai psychiatry hospital depression department. Used methods: Life Orientation Test-Revised, Rosenberg‘s Self-esteem Scale, General Self-efficacy Scale, Hardy 30 Item Scale, Resilience Scale, Perceived Benefit Scale. The results of the study showed that personality characteristics are more connected with the positive attitude toward illness than sociodemographic indicators: constant, positive resilience and age prognosticate positive attitude toward illness among diabetes patients. Constant and age prognosticate positive attitude toward illness among depression group. Constant (p < 0,001), negative self-esteem (β = -0,211, p = 0,035), positive resilience (β = 0,510, p < 0,001) and age (β = 0,253, p = 0,001) prognosticate positive... [to full text]

This study assesses generic and disease-specific Health-Related Quality of Life (HRQOL) in children and adolescents with Inflammatory Bowel Disease (IBD). More specifically, the purpose of the study is to address the relationship between disease- specific indicators, both on a symptom-by-symptom basis and as a whole, to overall HRQOL. Self- and proxy-report versions of the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and the newly developed Pediatric Quality of Life Inventory™ Gastrointestinal Symptoms Module were administered to 187 parent-child dyads at ten study sites across the United States. Disease-specific indicators included: stomach pain, stomach upset, trouble swallowing, heartburn and reflux, gas and bloating, constipation, and diarrhea. It was hypothesized that caregiver- and child-reported disease-specific HRQOL would be positively correlated with generic HRQOL, and that physical disease-specific indicators would contribute the greatest variance in total generic HRQOL scores, for both self and proxy report. Results confirmed the hypothesis that disease-specific HRQOL would be positively correlated with generic HRQOL for children and caregivers. Multivariate regression results revealed that the Stomach Pain and Hurt, Worry, Medicines, and Communication scales contributed the most variance to overall HRQOL scores for children. The same analysis performed for parent ratings yielded one statistically significant scale: Worry. In essence, intervention efforts aimed at reducing the influence of worry and anxiety may prove more effective in improving HRQOL outcomes than interventions targeting reduction of physical symptoms.

The lack of insight into their illness continues to be a significant barrier to treatment for people with schizophrenia. However, some people with the illness do develop insight which then results in stability and recovery from their condition. Having met the criteria of good insight, nineteen participants participated in semi-structured interviews exploring the concept of insight and recovery in the context of their personal experiences. Research design used grounded theory methodology layered with a further narrative analysis. The literature review and theoretical perspectives of care provide the context for the research, thus illuminating the known and determining what mysteries in insight development remain. Study findings revealed a Paradox of Insight within a 3-stage process of insight development: The Period of Chaos, the Dynamic Period, and the Period of Wisdom. An overarching Theory of Dangerousness explains the turning point from illness to recovery. This turning point occurs with a Trinity of Crisis. Within this theory, Four Constructions of Dangerousness explain how the meaning making of dangerousness affects recovery. Additionally, Four Types of Insight support this recovery. The importance, meaning, and relevance of study findings for recovery are the focus of the discussion. Six inter-rator focus groups affirmed the findings. Policy and practice implications are discussed, along with recommendations for further research and the acknowledgement of study limitations.

Individuals with chronic illnesses must manage long-term uncertainty and decision making as they cope with the ways the illness influences almost every aspect of their lives. In the context of pediatric illnesses, parents assume the burden of uncertainty management and decision making during the diagnosis and treatment of their child’s illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. The first visit to a specialist is often more elaborate than a routine primary care visit. While previous research has explored parents’ decision making and uncertainty management during a child’s diagnosis and during end-of-life care, less is known about these experiences during the long-term management of a chronic illness through the care of multiple specialists. The aim of the current study was to explore uncertainty and decision making during parents’ first visit to a multidisciplinary clinic for the care of their child’s complex chronic illness. Data were collected through survey measures and semi-structured interviews with 30 parents after their first visit to a vascular anomaly clinic at a large Midwestern children’s hospital. The results suggest parents’ communication with the team of specialists helps them reappraise uncertainty, engage in effective uncertainty management, and feel validated in their decision making. However, the findings also indicate that parents face multiple uncertainty management dilemmas, including not wanting certain types of information, feeling overwhelmed by the amount of information they receive, and having different information preferences than their spouses. Ultimately, the results also have important implications for existing uncertainty theories and their application to parents’ uncertainty experiences.

The Brofenbrenner(1979) ecological theory was applied to examine the relationship between parent and child depressive mood and the moderation of relational quality at two levels; 1) parent-child (within family) and 2) family-social support (outside family) levels. It was hypothesized that both levels would buffer the predictive association of parent to child depressive mood. At the first level, the parent-child depressive mood association was qualified by an interaction with relatedness (categorized as inadequate and adequate) that approached a conventional level of significance, R2 = .023, F(1,101) = 2.77, p = .099. At the second level, the addition of social support as a moderator yielded a R2 =.028, F(1,101) = 3.11, p = .081. Exploratory analyses were performed to clarify each moderation. The findings suggest that relational quality within and outside the family have the potential to serve as protective factors in regards to depressive symptoms for children with asthma.

Introduction: Studies show that women living in Sweden treated for coeliac disease have lower subjective health than other women. After showing signs of remission, adults who have coeliac disease and follow a gluten-free diet, are expected to handle the treatment without any further planned follow-up by health care. Aim: The overall aim of this thesis was to study aspects of living with coeliac disease in adults in the years beyond the diagnosis. Methods: Quantitative methods were used in Studies I, II and III. A qualitative content analysis was performed in Study IV. Results: The results show that women with coeliac disease have a lower level of well-being than men with coeliac disease. The women who have coeliac disease reported a high rate of gastrointestinal symptoms, although they followed a gluten-free diet, and they visited health care services more frequently than women who did not have coeliac disease. A low rate of gastrointestinal symptoms, a positive self-image and few comorbidity emerged as factors that positively affected well-being. Worries also seemed to be a companion of women diagnosed with coeliac disease in adulthood, typically evident when socializing with others. Conclusion: This thesis may provide evidence questioning the validity of declaring all women with coeliac disease showing a normalized intestinal mucosa to be in remission, and thus leaving them to self-management. Clinical implications: Health care professionals need to be aware of that the transition to a gluten-free life may vary for individuals. It does not seem enough to follow a gluten-free diet to reach a state of good well-being for all women. A major task for health care providers is therefore to support women with CD in reaching better subjective treatment outcomes. The results may also contribute to that health care system develops routines in order to optimise the care and treatment of these patients.

Models of health care concentrate on acute conditions yet the major cause of disease burden is chronic illness. An emphasis on biomedical, as opposed to bio-psychosocial models, underestimates psychological disability and fails to explain burdens resulting from illnesses with no known organic cause. Topics explored were: quality of life, chronic and acute stress, emotion regulation, communication, support services, patient expectations, satisfaction with medical treatment, and health care seeking. Using grounded theory (Glaser, 1992) and active patient participation (Susman & Evered, 1978), the major objective was to develop strategies to improve the management of chronic illness. Two groups were studied: 20 patients with an organic cause (cancer) and 21 patients with a non-organic cause (Irritable Bowel Syndrome). Using quantitative and qualitative measures, observational studies (N=29), interviews (N=41), focus groups (N=12), and a case study (N=10) were conducted. IBS patients reported greater disability (increased distress and reduced quality of life) than the cancer group and other chronic illnesses. Cancer patients showed impaired quality of life but they reported levels of distress up to 50% lower than the general population and 75% lower than another chronic illness group. Some cancer patients appeared to under-report levels of distress; however, when applying Pennebaker’s (1997) written disclosure method, emotional expression was not uniformly associated with beneficial outcomes. Interviews with IBS patients revealed that determinants of dissatisfaction involved a lack of acceptance and/or understanding of an IBS diagnosis and an expectation that consultants would find an organic cause. Cancer participants reported no need for participation in decisions concerning treatment. Evaluations of the quality of health services received were distinct from evaluations of the quality of care received by specialists. Fighting spirit and positivity were linked with emotional inhibition and a lack of uptake of support services. Patients became more pro-active in seeking emotional and social support later in their illness experience. These findings were interpreted within the Conservation of Resources Theory (COR; Hobfoll, 2001; 1999; 1998). Results in this study challenge public policy recommendations that focus on encouraging consumer participation in health care. Recommendations for intervention and future research with cancer patients focus on application of the COR theory. In IBS, patient education, improvements in communication and the adoption of Drossman’s (1998) bio-psychosocial model are advocated. Finally, recommendations for improvements in methodology involve suggestions to incorporate quantitative and qualitative measures using longitudinal assessments with the grounded theory (Glaser, 1992) approach being an excellent methodological template. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1339782 / Thesis (Ph.D.) - University of Adelaide, School of Psychology, 2008

PhD / People with a chronic illness, such as Parkinson’s disease, often live in the community for many years while the illness becomes progressively more debilitating. Little is known about how such people control the impact the disease has upon their various roles in life. This study employed naturalistic qualitative research methods to investigate how people with Parkinson’s disease and their partners continue to actively participate as members of their social community. Using in-depth semi-structured, focused interviews, participants with Parkinson’s disease and their partners were asked to name and describe roles that occupied their daily activity. They were asked about their most significant occupational roles, what they did in these roles, the knowledge or strategies they employed to deal with barriers to occupational role performance, and the personal meaning such roles held. Four basic themes evolved from the data: the impact of the disease on occupational role performance, or ‘doing’, secondary personal limitations to occupational role performance, secondary social limitations to occupational role performance and cumulative barriers to occupational role performance. Loss of control over choice and manner of engagement in occupational roles was a significant element of all four themes. Sense of self and sense of social fit were identified as major elements that informed participants’ perceptions of control. Participants described a range of diverse responses that they used to actively restore personal control of occupational performance in the face of degenerative illness. Learning new coping styles appeared to be underpinned by a personal set of rules or ‘blueprint’, despite professional input. This blueprint was actualised through a problem identification, problem solving and active engagement cycle that was termed a cycle of control. A conceptual model of a cycle of control was proposed as the final stage of the research. The model represented a way of describing how participants acted to restore a sense of personal control once a specific barrier to occupational role performance had been perceived. The findings of this study support the notion that people with chronic illness, such as Parkinson’s disease, are active and knowledgeable participants in health care, and have occupational histories and experiences that they harness when dealing with barriers to performance. Moreover, the findings demonstrate that people with chronic illness work in tandem with significant role partners to constantly maintain the valued partnership in meaningful occupational roles as the disease progresses. A greater understanding of how people with chronic illness and their partners strive to maintain a sense of personal control can enable occupational therapists to work effectively as ancillary partners in care. A greater understanding of the way in which role partners work together to maintain occupational integrity in their lives would be central to assessment and intervention for community programs for people with chronic illness.

Australia has one of the highest prevalence rates of asthma in the world and is one of the leading countries in the public health approach to the problem. Yet despite advances biomedical and public health discourses still provide various definitions of asthma and, at times, contradictory models of aetiology, treatment and prevention. These contrasting views are disseminated to the public by the media and in clinical encounters: they inform medical practice, pharmaceutical policy, and public perceptions and responses to the illness. In this thesis I explore the convergences and discrepancies in the representation of asthma and contrast these with the lived experiences of women with asthma. The thesis draws on research undertaken in Queensland, Australia, with women with asthma, and with their physicians and other people working in the field of asthma policy, practice and research. It is a medical anthropological approach to the problem of asthma and uses qualitative and quantitative methods in the collection of data. It then triangulates the qualitative and quantitative findings. The quantitative data are presented first and these are juxtaposed with the qualitative findings. The major concepts to emerge from the qualitative data include the acumen women have in terms of knowledge of their asthma; ambivalence in managing their asthma; and ambiguity in terms of the quality of their life. The findings of the research demonstrate that women with asthma, and the institutions in place to deal with it, suffocate, metaphorically keeping bodies just below the surface, suppressing their life in lieu of their illness. The central argument in this thesis is that despite positive advances in the area of asthma research, policy and practice, the continuing reliance on medical and public health models for the creation of knowledge in the area of chronic illness fails to adequately respond to the needs of women with asthma. The fundamental outcome of the research shows that the social and cultural capital a woman with asthma has in relation to knowledge, attitudes and practices, translates into disposition towards the management of her chronic condition. This is sometimes in direct contrast with existing knowledges. I argue that instead of research and practice that focuses on the deficits in knowledge of people with asthma, an asset-based approach to the problem of asthma – one that focuses on existing knowledge, attitudes and practices of these women may assist in managing the chronic illness condition in a more effective fashion.

Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded by debate, stigma, and uncertainty. Unsurprisingly, the little available research suggests that caring for a Child or Young Person (CYP) affected by the condition can be extremely challenging. While the majority of available literature is quantitative in nature, there is some qualitative research examining the impact of having a CYP with CFS/ME on parents. However, there currently appear to be no studies examining the narratives of parents living with a CYP with CFS/ME. Therefore, this research aimed to hear how parents narrate their experiences of living with a CYP affected by CFS/ME, paying attention to how they construct their identity, and the contested condition. Methodology: This research drew on a qualitative approach that explored the narratives of the participants. A purposive sample of five parents of CYP affected by CFS/ME (5 mothers) was recruited for a single semi-structured interview. The interviews were audio-recorded, transcribed, and analysed using a narrative approach to explore what participants said and how they narrated their accounts. This was then situated within the social and cultural contexts that shaped them. Analysis and Findings: Multiple readings of the narratives allowed me to develop a summary of each individual's narrative account. These were presented, after which similarities and differences across narratives were considered. Analysis identified six areas of collective focus: 'stories of onset and diagnosis', 'stories of battle', 'stories of finding the person/people who can help', 'stories of impact', 'stories of seeking social support', and 'stories of coping and adjustment'. Participants' narratives were heavily influenced by dominant societal discourses surrounding CFS/ME and motherhood, and could be seen as a response to these narratives. Consequently, participants offered particular constructions of the condition, themselves, their CYP, and others that they had come into contact with. These findings are discussed with reference to their potential bearing for clinical practice, strengths and limitations of the methodology, and directions for future research.