Primary brain tumor patients’ supportive care needs and multidisciplinary rehabilitation, community and psychosocial support services: Awareness, referral and utilization

Primary brain tumors are associated with significant physical, cognitive and psychosocial changes. Although treatment guidelines recommend offering multidisciplinary rehabilitation and support services to address patients’ residual deficits, the extent to which patients access such services is unclear. This study aimed to assess patients’ supportive care needs early after diagnosis, and quantify service awareness, referral and utilization. A population-based sample of 40 adults recently diagnosed with primary brain tumors was recruited through the Queensland Cancer Registry, representing 18.9% of the eligible population of 203 patients. Patients or carer proxies completed surveys of supportive care needs at baseline (approximately three months after diagnosis) and three months later. Descriptive statistics summarized needs and service utilization, and linear regression identified predictors of service use. Unmet supportive care needs were highest at baseline for all domains, and highest for the physical and psychological needs domains at each time point. At follow-up, participants reported awareness of, referral to, and use of 32 informational, support, health professional or practical services. All or almost all participants were aware of at least one informational (100%), health professional (100%), support (97%) or practical service (94%). Participants were most commonly aware of speech therapists (97%), physiotherapists (94%) and diagnostic information from the internet (88%). Clinician referrals were most commonly made to physiotherapists (53%), speech therapists (50%) and diagnostic information booklets (44%), and accordingly, participants most commonly used physiotherapists (56%), diagnostic information booklets (47%), diagnostic information from the internet (47%), and speech therapists (43%). Comparatively low referral to and use of psychosocial services may limit patients’ abilities to cope with their condition and the changes they experience.

Comparison of decision tree, support vector machines, and Bayesian network approaches for classification of falls in Parkinson’s disease

Being able to accurately predict the risk of falling is crucial in patients with Parkinson’s dis- ease (PD). This is due to the unfavorable effect of falls, which can lower the quality of life as well as directly impact on survival. Three methods considered for predicting falls are decision trees (DT), Bayesian networks (BN), and support vector machines (SVM). Data on a 1-year prospective study conducted at IHBI, Australia, for 51 people with PD are used. Data processing are conducted using rpart and e1071 packages in R for DT and SVM, con- secutively; and Bayes Server 5.5 for the BN. The results show that BN and SVM produce consistently higher accuracy over the 12 months evaluation time points (average sensitivity and specificity > 92%) than DT (average sensitivity 88%, average specificity 72%). DT is prone to imbalanced data so needs to adjust for the misclassification cost. However, DT provides a straightforward, interpretable result and thus is appealing for helping to identify important items related to falls and to generate fallers’ profiles.

Employees’ eldercare demands, strain, and perceived support

Purpose In many countries, both the number of older people in need of care and the number of employed caregivers of elderly relatives will increase over the next decades. The purpose of this paper is to examine the extent to which perceived organizational, supervisor, and coworker support for eldercare reduce employed caregivers’ strain and weaken the relationship between eldercare demands and strain. Design/methodology/approach Survey data were collected from 100 employed caregivers from one organization. Findings Results showed that eldercare demands were positively related to strain, and perceived organizational eldercare support (POES) was negatively related to strain. In addition, high POES weakened the relationship between eldercare demands and strain. Research limitations/implications The cross-sectional design and use of self-report scales constitute limitations of the study. Practical implications POES is a resource for employed caregivers, especially when their eldercare demands are high. Originality/value This research highlights the relative importance of different forms of perceived support for reducing employed caregivers’ strain and weakening the relationship between eldercare demands and strain.

Modelling end-of-life care practices: Factors associated with critical care nurse engagement in care provision

Objective To identify factors associated with critical care nurses’ engagement in end-of-life care practices. Methods Multivariable regression modelling was undertaken on 392 responses to an online self-report survey of end-of-life care practices and factors influencing practice by Australian critical care nurses’. Univariate general linear models were built for six end-of-life care practice areas. Results Six statistically significant (p < 0.001) models were developed: Information sharing F(3, 377) = 40.53, adjusted R2 23.8%; Environmental modification F(5, 380) = 19.55, adjusted R2 19.4%; Emotional support F(10, 366) = 12.10, adjusted R2 22.8%; Patient and family centred decision making F(8, 362) = 17.61 adjusted R2 26.4%; Symptom management F(8, 376) = 7.10, adjusted R2 11.3%; and Spiritual support F(9, 367) = 14.66, adjusted R2 24.6%. Stronger agreement with values consistent with a palliative approach, and greater support for patient and family preferences were associated with higher levels of engagement in end-of-life care practices. Higher levels of preparedness and access to opportunities for knowledge acquisition were associated with engagement in the interpersonal practices of patient and family centred decision making and emotional support. Conclusion This study provides evidence for interventions to address factors associated with nurse engagement to increase participation in all end-of-life care practice areas.

A randomized controlled trial protocol testing a decision support intervention for older patients with advanced kidney disease

Aim To assess the effectiveness of a decision support intervention using a pragmatic single blind Randomized Controlled Trial. Background Worldwide the proportion of older people (aged 65 years and over) is rising. This population is known to have a higher prevalence of chronic diseases including chronic kidney disease. The resultant effect of the changing health landscape is seen in the increase in older patients (aged ≥65 years) commencing on dialysis. Emerging evidence suggests that for some older patients dialysis may provide minimal benefit. In a majority of renal units non-dialysis management is offered as an alternative to undertaking dialysis. Research regarding decision-making support that is required to assist this population in choosing between dialysis or non-dialysis management is limited. Design. A multisite single blinded pragmatic randomized controlled trial is proposed. Methods Patients will be recruited from four Queensland public hospitals and randomizd into either the control or intervention group. The decision support intervention is multimodal and includes counselling provided by a trained nurse. The comparator is standard decision-making support. The primary outcomes are decisional regret and decisional conflict. Secondary outcomes are improved knowledge and quality of life. Ethics approval obtained November 2014. Conclusion This is one of the first randomized controlled trials assessing a decision support intervention in older people with advance chronic kidney disease. The results may provide guidance for clinicians in future approaches to assist this population in decision-making to ensure reduced decisional regret and decisional conflict.

Spirituality in Indian University students and its associations with socioeconomic status, religious background, social support, and mental health

The present study aimed to understand spirituality and its relationships with socioeconomic status (SES), religious background, social support, and mental health among Indian university students. It was hypothesized that: - (1) female university students will be more spiritual than male university students, - (2) four domains of spirituality will differ significantly across socioeconomic and religious background of the university students in addition to social support, and; - (3) there will be a positive relationship between spirituality and mental health of university students, irrespective of gender. A group of 475 postgraduate students aged 20–27 years, 241 males and 234 females, from various disciplines of Pondicherry University, India, participated in the study. Students’ background was collected using a structured questionnaire. Overall spirituality and its four dimensions were measured using the Spirituality Attitude Inventory, while mental health status was estimated based on scores of the psychological subscale of the WHO Quality of Life Questionnaire. Female students were significantly more spiritual than male students, particularly in spiritual practice and sense of purpose/connection. Hindu religion and lower family income were associated with lower spirituality. Higher spirituality was associated with congenial family environment and more support from teachers and classmates. There was a strong association between overall spirituality and two spirituality domains (spiritual belief and sense of purpose/connection) with better mental health. Findings suggest an opportunity for open dialogue on spirituality for university students as part of their mental health and support services that fosters a positive mind set and enhancement of resilience.

A model for determining the optimal project life span and concession period of BOT projects

The concession agreement is the core feature of BOT projects, with the concession period being the most essential feature in determining the time span of the various rights, obligations and responsibilities of the government and concessionaire. Concession period design is therefore crucial for financial viability and determining the benefit/cost allocation between the host government and the concessionaire. However, while the concession period and project life span are essentially interdependent, most methods to date consider their determination as contiguous events that are determined exogenously. Moreover, these methods seldom consider the, often uncertain, social benefits and costs involved that are critical in defining, pricing and distributing benefits and costs between the various parties and evaluating potentially distributable cash flows. In this paper, we present the results of the first stage of a research project aimed at determining the optimal build-operate-transfer (BOT) project life span and concession period endogenously and interdependently by maximizing the combined benefits of stakeholders. Based on the estimation of the economic and social development involved, a negotiation space of the concession period interval is obtained, with its lower boundary creating the desired financial return for the private investors and its upper boundary ensuring the economic feasibility of the host government as well as the maximized welfare within the project life. The outcome of the new quantitative model is considered as a suitable basis for future field trials prior to implementation. The structure and details of the model are provided in the paper with Hong Kong tunnel project as a case study to demonstrate its detailed application. The basic contributions of the paper to the theory of construction procurement are that the project life span and concession period are determined jointly and the social benefits taken into account in the examination of project financial benefits. In practical terms, the model goes beyond the current practice of linear-process thinking and should enable engineering consultants to provide project information more rationally and accurately to BOT project bidders and increase the government's prospects of successfully entering into a contract with a concessionaire. This is expected to generate more negotiation space for the government and concessionaire in determining the major socioeconomic features of individual BOT contracts when negotiating the concession period. As a result, the use of the model should increase the total benefit to both parties.

Time-driven life cycle cost estimation system for product family design

This research develops a design support system, which is able to estimate the life cycle cost of different product families at the early stage of product development. By implementing the system, a designer is able to develop various cost effective product families in a shorter lead-time and minimise the destructive impact of the product family on the environment.

Evaluating the effectiveness of a self-management exercise intervention on wound healing, functional ability and health-related quality of life outcomes in adults with venous leg ulcers: a randomised controlled trial

Exercise that targets ankle joint mobility may lead to improvement in calf muscle pump function and subsequent healing. The objectives of this research were to assess the impact of an exercise intervention in addition to routine evidence-based care on the healing rates, functional ability and health-related quality of life for adults with venous leg ulcers (VLUs). This study included 63 patients with VLUs. Patients were randomised to receive either a 12-week exercise intervention with a telephone coaching component or usual care plus telephone calls at the same timepoints. The primary outcome evaluated the effectiveness of the intervention in relation to wound healing. The secondary outcomes evaluated physical activity, functional ability and health-related quality of life measures between groups at the end of the 12 weeks. A per protocol analysis complemented the effectiveness (intention-to-treat) analysis to highlight the importance of adherence to an exercise intervention. Intention-to-treat analyses for the primary outcome showed 77% of those in the intervention group healed by 12 weeks compared to 53% of those in the usual care group. Although this difference was not statistically significant due to a smaller than expected sample size, a 24% difference in healing rates could be considered clinically significant. The per protocol analysis for wound healing, however, showed that those in the intervention group who adhered to the exercise protocol 75% or more of the time were significantly more likely to heal and showed higher rates for wound healing than the control group (P = 0·01), that is, 95% of those who adhered in the intervention group healed in 12 weeks. The secondary outcomes of physical activity, functional ability and health-related quality of life were not significantly altered by the intervention. Among the secondary outcomes (physical activity, functional ability and health-related quality of life), intention-to-treat analyses did not support the effectiveness of the intervention. However, per protocol analyses revealed encouraging results with those participants who adhered more than 75% of the time (n = 19) showing significantly improved Range of Ankle Motion from the self-management exercise programme (P = 0·045). This study has shown that those participants who adhere to the exercise programme as an adjunctive treatment to standard care are more likely to heal and have better functional outcomes than those who do not adhere to the exercises in conjunction with usual care.

Reengaging, reenacting and reenvisaging discourses of disaster through public space performance: Austerity, art, and the art of protest

This paper offers a mediation on disaster, recovery, resilience, and restoration of balance, in both a material and a metaphorical sense, when ‘disaster’ befalls not the body politic of the nation but the body personal. In the past few decades, of course, artists, activists and scholars have deliberately tried to avoid describing personal, physical and phenomenological experiences of the disabled body in terms of difficulty and disaster. This has been part of a political move, from a medical model, in which disability, disease and illness are positioned as personal catastrophes, to a social model, in which disability is positioned as a social construct that comes from systems, institutions and infrastructure designed to exclude different bodies. It is a move that is responsible for a certain discomfort people with disabilities, and artists with disabilities, today feel towards performances that deploy disability as a metaphor for disaster, from Hijikata, to Theatre Hora. In the past five years, though, this particular discourse has begun rising again, particularly as people with disabilities fact their own anything but natural disasters as a result of the austerity measures now widespread across the US, UK, Europe and elsewhere. Measures that threaten people’s ability to live, and take part in social and institutional life, in any meaningful way. Measures that, as artist Katherine Araniello notes, also bring additional difficulty, danger, and potential for disaster as they ripple outwards across the tides of familial ties, threatening family, friends, and careers who become bound up in the struggle to do more with less. In this paper, I consider how people with disabilities use performance, particularly public space interventionalist performance, to reengage, renact and reenvisage the discourse of national, economic, environmental or other forms of disaster, the need for austerity, the need to avoid providing people with support for desires and interests as well as basic daily needs, particularly when fraud and corruption is so right, and other such ideas that have become an all too unpleasant reality for many people. Performances, for instance, like Liz Crow’s Bedding Out, where she invited people into her bed – for people with disabilities a symbolic space, which necessarily becomes more a public living room restaurant, office and so forth than a private space when poor mobility means they spend much time it in – to talk about their lives, their difficulties, and dealing with austerity. Or, for instance, like the Bolshy Divas, who mimic public and political policy, reports and advertising paranoia to undermine their discourses about austerity. I examine the effects, politics and ethics of such interventions, including examination of the comparative effect of highly bodied interventions (like Crow’s) and highly disembodied interventions (like the Bolshy Diva’s) in discourses of difficulty, disaster and austerity on a range of target spectator communities.

HealthMap: A cluster randomised trial of interactive health plans and self-management support to prevent coronary heart disease in people with HIV

Background The leading causes of morbidity and mortality for people in high-income countries living with HIV are now non-AIDS malignancies, cardiovascular disease and other non-communicable diseases associated with ageing. This protocol describes the trial of HealthMap, a model of care for people with HIV (PWHIV) that includes use of an interactive shared health record and self-management support. The aims of the HealthMap trial are to evaluate engagement of PWHIV and healthcare providers with the model, and its effectiveness for reducing coronary heart disease risk, enhancing self-management, and improving mental health and quality of life of PWHIV. Methods/Design The study is a two-arm cluster randomised trial involving HIV clinical sites in several states in Australia. Doctors will be randomised to the HealthMap model (immediate arm) or to proceed with usual care (deferred arm). People with HIV whose doctors are randomised to the immediate arm receive 1) new opportunities to discuss their health status and goals with their HIV doctor using a HealthMap shared health record; 2) access to their own health record from home; 3) access to health coaching delivered by telephone and online; and 4) access to a peer moderated online group chat programme. Data will be collected from participating PWHIV (n = 710) at baseline, 6 months, and 12 months and from participating doctors (n = 60) at baseline and 12 months. The control arm will be offered the HealthMap intervention at the end of the trial. The primary study outcomes, measured at 12 months, are 1) 10-year risk of non-fatal acute myocardial infarction or coronary heart disease death as estimated by a Framingham Heart Study risk equation; and 2) Positive and Active Engagement in Life Scale from the Health Education Impact Questionnaire (heiQ). Discussion The study will determine the viability and utility of a novel technology-supported model of care for maintaining the health and wellbeing of people with HIV. If shown to be effective, the HealthMap model may provide a generalisable, scalable and sustainable system for supporting the care needs of people with HIV, addressing issues of equity of access. Trial registration Universal Trial Number (UTN) U111111506489; ClinicalTrial.gov Id NCT02178930 submitted 29 June 2014