Projecting Computational Sense of Self: A Study of Transition in a Chronic Illness Online Community

We report on analysis of discussions in an online community of people with chronic illness using socio-cognitively motivated, automatically produced semantic spaces. The analysis aims to further the emerging theory of "transition" (how people can learn to incorporate the consequences of illness into their lives). An automatically derived representation of sense of self for individuals is created in the semantic space by the analysis of the email utterances of the community members. The movement over time of the sense of self is visualised, via projection, with respect to axes of "ordinariness" and "extra-ordinariness". Qualitative evaluation shows that the visualisation is paralleled by the transitions of people during the course of their illness. The research aims to progress tools for analysis of textual data to promote greater use of tacit knowledge as found in online virtual communities. We hope it also encourages further interest in representation of sense-of-self.

Associations exist between food insecurity, poor diet, chronic illness and obesity among an Australian population

Food insecurity is the limited availability of, or access to, sufficient amounts of nutritious, culturally-appropriate and safe foods, or the inability to access such foods by socially-acceptable means. Evidence from the United States and Canada suggests that food insecurity may be associated with poor dietary intakes, obesity, and chronic disease including depression and diabetes, thus constituting a significant public health issue. Currently, no existing studies have investigated the dietary and health factors associated with food insecurity among the general Australian population. The current study investigated the potential associations between food insecurity, diet and health among Australian adults (18 years and over) participating in the cross-sectional National Health Survey (n = 19,500). Data were analysed by logistic regression adjusting for sociodemographic covariates. Those from food insecure households were 50% less likely to consume the recommended number of servings of fruit, 60% more likely to report poor health and experienced a 6-fold increase in the risk of severe depressive disorders, compared to their food secure counterparts. Furthermore, food insecurity was associated with a 50% increase in the risk of being diagnosed with ‘high sugar levels’. Finally, women from food insecure households were 30% more likely to be obese compared to their food secure counterparts. These findings suggest that food insecurity may play an important role in preventing adherence with national dietary recommendations, and may increase the risk of obesity and chronic illness. This has important implications for both clinical practice, and the development of interventions and policy to address food insecurity.

A systematic review of interventions to enhance medication adherence in children and adolescents with chronic illness

Introduction Poor medication adherence is common in children and adolescents with chronic illness, but there is uncertainty about the best way to enhance medication adherence in this group. The authors conducted a systematic review of controlled trials examining interventions that aim to improve medication adherence. Method A comprehensive literature search was undertaken to locate controlled trials that described specific interventions aiming to improve adherence to long-term medication, where participants were aged 18 years and under, medication adherence was reported as an outcome measure, and which could be implemented by individual health practitioners. Studies were reviewed for quality and outcome. Results 17 studies met inclusion criteria: seven studies examined educational strategies, seven studies examined behavioural interventions and three studies examined educational intervention combined with other forms of psychological therapies. Only two of seven studies reported a clear benefit for education on medication adherence, whereas four of seven trials indicated a benefit of behavioural approaches on medication adherence. One trial reported that combining education with behavioural management may be more effective than education alone. Studies which combined education with other non-medication specific psychological interventions failed to demonstrate a beneficial effect on medication adherence. Only two studies examined adherence-promoting interventions in young people with established adherence problems. Conclusion These findings suggest that education interventions alone are insufficient to promote adherence in children and adolescents, and that incorporating a behavioural component to adherence interventions may increase potential efficacy. Future research should examine interventions in high-risk groups.

Management of chronic pain

When you have completed this chapter you will be able to: • recognise the scope and impact of chronic pain in Australia • discuss the relevance of a biopsychosocial model of chronic pain for persons with chronic illness and disability • identify key components of pain assessment • acknowledge the central role the person with chronic pain takes in the management of their health • identify a range of therapies available for the management of chronic pain

Quality of life, fatigue and activity in Australians with chronic kidney disease : a longitudinal study

Aims and objectives This study sought to determine the relationship between health related quality of life (HRQoL), fatigue and activity levels of people with anaemia secondary to chronic kidney disease (CKD) over a 12 month period following the introduction of an erythropoietin stimulating agent (ESA). Background CKD occurs in five stages and it is a complex chronic illness which severely impacts on an individual’s HRQoL, and ability to perform everyday activities. Fatigue is also a common symptom experienced by people with CKD. Design and methods Using a longitudinal repeated measures design, 28 people with CKD completed the SF-36, human activity profile and fatigue severity scale at the commencement of an ESA and then at 3, 6 and 12 months. Results Over a 12 month period, people reported a significant change in HRQoL in relation to role physical, vitality, mental health/emotional well-being and overall mental health. However activity levels did not significantly improve during that time. Both the amount of breathlessness and level of fatigue were highest at baseline and declined over time. Both fatigue and breathlessness were correlated with less reported general health over time. Conclusion Renal nurses, in dialysis units and CKD outpatient clinics, have repeated and frequent contact with people with CKD over long periods of time, and are in an ideal position to routinely assess fatigue and activity levels and to institute timely interventions. Early detection would enable timely nursing interventions to optimise HRQoL and independent activity. Relevance to Clinical Practice Drawing on rehabilitation nursing interventions could assist renal nurses to minimize the burden of fatigue and its impact on simple everyday activities and a person’s quality of life. These interventions are important for people who are living at home and could assist in lowering the burden on home support services.

The health information practices of people living with chronic health conditions: Implications for health literacy

The reduction of the health literacy concept to a functional relationship with text, does not acknowledge the range of information sources that people draw from in order to make informed decision about their health and treatment. Drawing from two studies that explored how people with two different but complex and life-threatening chronic health conditions, chronic kidney disease and HIV, a socio-cultural understanding of the practise of health literacy is described. Health information is experienced by patients as a chronic health condition landscape, and develops from three information sources; namely epistemic, social and corporeal sources. Participants in both studies used activities that involved orienting, sharing and creating information to map this landscape which was used to inform their decision-making. These findings challenge the traditional conceptions of health literacy and suggest an approach that views the landscape of chronic illness as being socially, physically and contextually constructed. This approach necessitates a recasting of health literacy away from a sole interest in skills and towards understanding how information practices facilitate people becoming health literate.

Living with Illness : psychosocial challenges

"Living with Illness: Psychosocial Challenges focuses on developing and strengthening understanding of the illness experience. It encourages students to critically appraise conventional approaches to understanding and caring for those who are ill, to empower readers to off true holistic care and to, where appropriate, change nursing practice in light of current research findings. Traditionally nurses have drawn on knowledge from sociology and psychology as two separate but related disciplines to nursing, leaving the beginning level nurse to relate, integrate and translate knowledge gained into nursing practice. Living with Illness combines, in a unique way, sociological and psychological perspectives to creatively represent psychosocial knowledge that is innovative and directly applicable to contemporary nursing practice."-publisher website

A longitudinal study of the impact of chronic psychological stress on health-related quality of life and clinical biomarkers : protocol for the Australian Healthy Aging of Women Study

BACKGROUND: Despite advancements in our understanding of the importance of stress reduction in achieving good health, we still only have limited insight into the impact of stress on cellular function. Recent studies have suggested that exposure to prolonged psychological stress may alter an individual's physiological responses, and contribute to morbidity and mortality. This paper presents an overview of the study protocol we are using to examine the impact of life stressors on lifestyle factors, health-related quality of life and novel and established biomarkers of stress in midlife and older Australian women.The primary aim of this study is to explore the links between chronic psychological stress on both subjective and objective health markers in midlife and older Australian women. The study examines the extent to which exposure frightening, upsetting or stressful events such as natural disasters, illness or death of a relative, miscarriage and relationship conflict is correlated with a variety of objective and subjective health markers.Methods/design: This study is embedded within the longitudinal Healthy Aging of Women's study which has collected data from midlife and older Australian women at 5 yearly intervals since 2001, and uses the Allostastic model of women's health by Groer and colleagues in 2010. The current study expands the focus of the HOW study and will assess the impact of life stressors on quality of life and clinical biomarkers in midlife and older Australian women to explain the impact of chronic psychological stress in women. DISCUSSION: The proposed study hypothesizes that women are at increased risk of exposure to multiple or repeated stressors, some being unique to women, and the frequency and chronicity of stressors increases women's risk of adverse health outcomes. This study aims to further our understanding of the relationships between stressful life experiences, perceived quality of life, stress biomarkers, chronic illness, and health status in women.

Development of the benefit finding in multiple sclerosis (MS) caregiving scale: A longitudinal study of relations between benefit finding and adjustment

Benefit finding is a meaning making construct that has been shown to be related to adjustment in people with MS and their carers. This study investigated the dimensions, stability and potency of benefit finding in predicting adjustment over a 12 month interval using a newly developed Benefit Finding in Multiple Sclerosis Scale (BFiMSS). Usable data from 388 persons with MS and 232 carers was obtained from questionnaires completed at Time 1 and 12 months later (Time 2). Factor analysis of the BFiMSS revealed seven psychometrically sound factors: Compassion/Empathy, Spiritual Growth, Mindfulness, Family Relations Growth, Life Style Gains, Personal Growth, New Opportunities. BFiMSS total and factors showed satisfactory internal and retest reliability coefficients, and convergent, criterion and external validity. Results of regression analyses indicated that the Time 1 BFiMSS factors accounted for significant amounts of variance in each of the Time 2 adjustment outcomes (positive states of mind, positive affect, anxiety, depression) after controlling for Time 1 adjustment, and relevant demographic and illness variables. Findings delineate the dimensional structure of benefit finding in MS, the differential links between benefit finding dimensions and adjustment and the temporal unfolding of benefit finding in chronic illness.