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.

Development and psychometric evaluation of the spirituality instrument (SpI-27) in a sample of people with chronic illness

Background: Spirituality is fundamental to all human beings, existing within a person, and developing until death. This research sought to operationalise spirituality in a sample of individuals with chronic illness. A review of the conceptual literature identified three dimensions of spirituality: connectedness, transcendence, and meaning in life. A review of the empirical literature identified one instrument that measures the three dimensions together. Yet, recent appraisals of this instrument highlighted issues with item formulation and limited evidence of reliability and validity. Aim: The aim of this research was to develop a theoretically-grounded instrument to measure spirituality – the Spirituality Instrument-27 (SpI-27). A secondary aim was to psychometrically evaluate this instrument in a sample of individuals with chronic illness (n=249). Methods: A two-phase design was adopted. Phase one consisted of the development of the SpI-27 based on item generation from a concept analysis, a literature review, and an instrument appraisal. The second phase established the psychometric properties of the instrument and included: a qualitative descriptive design to establish content validity; a pilot study to evaluate the mode of administration; and a descriptive correlational design to assess the instrument’s reliability and validity. Data were analysed using SPSS (Version 18). Results: Results of exploratory factor analysis concluded a final five-factor solution with 27 items. These five factors were labelled: Connectedness with Others, Self-Transcendence, Self-Cognisance, Conservationism, and Connectedness with a Higher Power. Cronbach’s alpha coefficients ranged from 0.823 to 0.911 for the five factors, and 0.904 for the overall scale, indicating high internal consistency. Paired-sample t-tests, intra-class correlations, and weighted kappa values supported the temporal stability of the instrument over 2 weeks. A significant positive correlation was found between the SpI-27 and the Spirituality Index of Well-Being, providing evidence for convergent validity. Conclusion: This research addresses a call for a theoretically-grounded instrument to measure spirituality.

The challenge of patients’ unmet palliative care needs in the final stages of chronic illness.

Background: There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim: This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods: The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi’s approach to qualitative analysis. Findings: Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual’s disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients’ future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion: Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual’s holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed. Pa

Does chronic illness place constraints on positive constructions of identity? Temporal comparisons and self-evaluations in people with schizophrenia

It is often suggested that people in potentially threatening situations might engage in self-enhancing temporal comparisons that allow them to view themselves and their experience in a more positive light. Data from semistructured interviews with 12 individuals in the UK diagnosed as having schizophrenia were content analyzed to explore patterns of temporal comparison. The study found that the onset of schizophrenic symptoms created a new baseline in participants' representations of their past, with different types of temporal comparisons occurring before and after this point. Although comparisons with past selves after onset supported the suggestion that people may select and construct their past in such a manner that permits them to see their present circumstances more positively and envisage a better future, comparisons with past selves before onset were more negative. The findings suggest that the Theory of Temporal Self-Appraisals (Ross I Wilson, 2000) needs to be elaborated to include people who have experienced major life changes. (c) 2004 Elsevier Ltd. All rights reserved.

Qualitative research on chronic illness:A commentary on method and conceptual development

This concluding essay discusses some crucial methodological issues raised by other papers in this issue. It also suggests directions for further conceptuel development concerning the qualitative research on chronic illness.

Overcoming the stigma of chronic illness: strategies for normalisation of a 'spoiled identity'

This paper addresses the concept of chronic illness as a socially constructed experience of stigma. The stigma of having a chronic illness affects the person's self-concept, capacity to adapt to the illness and the quality of his/her social networks. Social stigma is a delegitimising social process derived from both popular and medical views of chronic illness. Based on research into the coping strategies of a range of people with long-term, serious chronic illnesses, the paper argues that government health policies and services in Australia can best help people with chronic illness by supporting their self-help groups and community-based activities.

The impact of chronic illness on relationships in early adulthood: a comparison study between healthy and arthritic young adults

While engaging in romantic relationships is regarded as a normative task during young adulthood, non-normative life events such as the emergence of chronic illness can mitigate against the successful negotiation of such tasks. Chronic illness brings with it a series of additional challenges and stressors to the realm of personal relationships that are thought to interrupt the development of normative interpersonal and intra-individual processes. However, few studies have examined how young adults faced with a chronic illness such as arthritis navigate romantic relationships and the consequences of illness and relationships on psychological adjustment. The aim of the study was to compare the relationship experiences of healthy young adults with those faced with arthritis. One hundred and nine young adults (M 23.01 years, SD 2.43) took part in the study. Of these participants 41 had been diagnosed with arthritis. A univariate MANOVA revealed arthritic young adults reported significantly more insecure attachment, lower levels of readiness for intimacy, and poorer relationship satisfaction compared to healthy young adults. Further correlational and regression analyses on the arthritic sample revealed psychological adjustment was related to arthritis severity, attachment and components of coping. Findings will be discussed in relation to attachment theory and coping processes.