Family-based care in chronic illness management

This paper proposes a research programme to develop and evaluate technologies to support family-based care in chronic illness management.

A longitudinal study of economic pressure among people living with a progressive neurological illness

Objectives: Previous research has examined costs associated with progressive neurological illnesses, but has not examined predictors of economic pressure, or quality of life (QOL). The aim of the current study was to examine the predictors of both economic pressure and QOL among people with a range of progressive neurological illness.

Method: Participants were 257 people with motor neurone disease, Huntington’s disease, multiple sclerosis and Parkinson’s.

Results: High levels of cut backs in spending predicted economic pressure for all groups. Economic pressure predicted QOL at 12-month follow-up for all groups except Parkinson’s. For Parkinson’s, predictors of QOL were long duration of illness, illness-related expenses and cut backs in spending. Cut backs in spending, and not income or expenses, were the most important predictor of economic pressure. QOL was predicted by high levels of economic pressure for most of the illness groups.

Discussion: The implications of these findings are discussed. They suggest that cut backs in spending, as opposed to income and expenses, are important factors to focus on assisting people to adjust to the changes to their financial situation that frequently occurs after developing one of these progressive neurological illnesses.

Tracheostomy decannulation failure rate following critical illness : a prospective descriptive study

Background : Tracheostomy is a well established and practical approach to airway management for patients requiring extended periods of mechanical ventilation or airway protection. Little evidence is available to guide the process of weaning and optimal timing of tracheostomy tube removal. Thus, decannulation decisions are based on clinical judgement. The aim of this study was to describe decannulation practice and failure rates in patients with tracheostomy following critical illness.

Methods : A prospective descriptive study was conducted of consecutive patients who received a tracheostomy at a tertiary metropolitan public hospital intensive care unit (ICU) between March 2002 and December 2006. Data were analysed using descriptive and inferential tests.

Results : Of the 823 decannulation decisions, there were 40 episodes of failed decannulation, a failure rate of 4.8%. These 40 episodes occurred in 35 patients: 31 patients failed once, 3 patients failed twice and 1 patient failed three times. There was no associated mortality. Simple stoma recannulation was required in 25 episodes, with none of these patients readmitted to ICU. Translaryngeal intubation and readmission to ICU took place for the remaining 15 episodes. The primary reason for decannulation failure was sputum retention. Twenty-four patients (60%) failed decannulation within 24 h, with 14 of these occurring within 4 h.

Conclusions : Clinical assessments coupled with professional judgement to decide the optimal time to remove tracheostomy tubes in patients following critical illness resulted in a failure rate comparable with published data. Although reintubation and readmission to ICU was required in just over one third of failed decannulation episodes, there was no associated mortality or other significant adverse events. Our data suggest nurses need to exercise high levels of clinical vigilance during the first 24 h following decannulation, particularly the first 4 h to detect early signs of respiratory compromise to avoid adverse outcomes.

Is early intervention in psychosis cost-effective over the long term?

Objective: This study assesses the long-term cost-effectiveness of a comprehensive model of mental health care for first-episode psychosis. The study is an extension of a previous economic evaluation of the Early Psychosis Prevention and Intervention Centre (EPPIC) that assessed the first-year costs and outcomes of treatment.

Method: The current study used a matched, historical control group design with a follow-up of approximately 8 years. Complete follow-up data were available for 65 of the original 102 participants. Direct public mental health service costs incurred subsequent to the first year of treatment and symptomatic and functional outcomes of 32 participants initially treated for up to 2 years at EPPIC were compared with a matched cohort of 33 participants initially treated by generic mental health services. Treatment-related resource use was measured and valued using Australian published prices.

Results: Almost 8 years after initial treatment, EPPIC subjects displayed lower levels of positive psychotic symptoms (P = .007), were more likely to be in remission (P = .008), and had a more favorable course of illness (P = .011) than the controls. Fifty-six percent of the EPPIC cohort were in paid employment over the last 2 years compared with 33% of controls (P = .083). Each EPPIC patient costs on average A$3445 per annum to treat compared with controls, who each costs A$9503 per annum.

Conclusions: Specialized early psychosis programs can deliver a higher recovery rate at one-third the cost of standard public mental health services. Residual methodological limitations and limited sample size indicate that further research is required to verify this finding.

Finding God in illness

In our ‘Spirituality and Living’ strand, Beth Crisp offers an account of her experience of serious illness, and asks whether, without romanticising, it can offer an opportunity to ‘find God in all things’.

The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes

Background: Support for patient self-management is an accepted role for health professionals. Little evidence exists on the appropriate basis for the role of health professionals in achieving optimum self-management outcomes. This study explores the perceptions of people with type 2 diabetes about their self-management strategies and how relationships with health professionals may support this.

Methods: Four focus groups were conducted with people with type 2 diabetes:  two with English speaking and one each with Turkish and Arabic-speaking. Transcripts from the groups were analysed drawing on grounded hermeneutics and interpretive description.

Results: We describe three conceptually linked categories of text from the focus groups based on emotional context of self management, dominant approaches to self management and support from health professionals for self management. All groups described important emotional contexts to living with and self-managing diabetes and these linked closely with how they approached their diabetes management and what they looked for from health professionals. Culture seemed an important influence in shaping these linkages.

Conclusion: Our findings suggest people construct their own individual self-management and self-care program, springing from an important emotional base. This is shaped in part by culture and in turn determines the aims each  person has in pursuing self-management strategies and the role they make available to health professionals to support them. While health professionals'  support for self-care strategies will be more congruent with patients' expectations if they explore each person's social, emotional and cultural circumstances, pursuit of improved health outcomes may involve a careful balance between supporting as well as helping shift the emotional constructs surrounding a patient life with diabetes.

When the whole 'bloke' thing starts to crumble : men's access to chronic illness (arthritis) self management programs

This thesis explores the issue of men's access to chronic illness self management programs from a social constructionist perspective. A combination of research methodologies was used; a quantitative analysis to confirm gender differences in levels and patterns of service use; a qualitative analysis to gain an increased understanding of the factors affecting men's access; and a trial to test the application of the research findings. The clients and services of Arthritis Victoria were chosen as the setting for this research. The quantitative analyses were conducted on contingency tables and odds ratios and confirmed that men were under-represented as service users. The analyses also identified gender differences in patterns of service use. The qualitative analysis was based on a series of in-depth, semi-structured interviews. It was undertaken from a grounded theory approach to allow for the development of theoretical explanations grounded in the data. It was found that men's decisions to access chronic illness self management programs were strongly influenced by dominant social constructions of masculinity which constrained help-seeking and health management behaviour. However, the restrictive influence of hegemonic masculinity was progressively undermined by the increasing severity of the chronic condition until a crisis point was reached in terms of the severity of the condition or its impact on lifestyle. This resulted in a reformulation or rejection of hegemonic masculinity. The described conceptual framework was consistent for men from diverse social groupings, although it appeared less prominent in both younger and older men, suggesting that dominant social constructions of masculinity have the greatest influence on health decisions during the middle stage of adulthood when work and family obligations are greatest. The thesis findings informed the development of some guiding principles for reviewing the structure and delivery of chronic illness self management services for men. The guiding principles will have direct application in the planning of Arthritis Victoria programs, and implications for other chronic illness self management programs in Australia, and also in Western countries with a similar health and sociocultural setting to Australia.

Spurious precision : variability in procedural validity of diagnostic procedures in psychotic disorders and implications for research and treatment

Very few studies have quantified the level of agreement among alternative diagnostic procedures that use a common set of fixed operational criteria. The authors examined the procedural validity of four independent methods of assigning DSM-III-R diagnoses of psychotic disorders. METHOD: The research was conducted as a satellite study to the DSM-IV Field Trial for Schizophrenia and Related Psychotic Disorders. The setting was the National Health and Medical Research Council Schizophrenia Research Unit's Early Psychosis Prevention and Intervention Centre, which focuses on first-episode psychosis. Consecutively admitted patients (N = 50) were assessed by independent raters who used four different procedures to determine a DSM-III-R diagnosis. These procedures were 1) the diagnostic instrument developed for the DSM-IV field trial, 2) the Royal Park Multidiagnostic Instrument for Psychosis, 3) the Munich Diagnostic Checklists, and 4) a consensus DSM-III-R diagnosis assigned by a team of clinician researchers who were expert in the use of diagnostic criteria. RESULTS: Concordance between pairs of diagnostic procedures was only moderate. Corresponding levels of percent agreement, however, ranged from 66% to 76%, with converse misclassification rates of 24%-34% (assuming one procedure to be "correct"). CONCLUSIONS: These findings have significant research and clinical implications. Despite the introduction of operationally defined diagnoses, there remained an appreciable level of differential classification or misclassification arising from variability in the method of assigning the diagnostic criteria rather than the criteria themselves. Such misclassification may impede neurobiological research and have harmful clinical effects on patients with first-episode psychosis.