How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia

Purpose The purpose of this work was to explore how men and women construct their experiences living with lymphoedema following treatment for any cancer in the context of everyday life. Methods The design and conduct of this qualitative study was guided by Charmaz’ social constructivist grounded theory. To collect data, focus groups and telephone interviews were conducted. Audiotapes were transcribed verbatim and imported into NVivo8 to organise data and codes. Data were analysed using key grounded theory principles of constant comparison, data saturation and initial, focused and theoretical coding. Results Participants were 3 men and 26 women who had developed upper- or lower-limb lymphoedema following cancer treatment. Three conceptual categories were developed during data analysis and were labelled ‘accidental journey’, ‘altered normalcy’ and ‘ebb and flow of control’. ‘Altered normalcy’ reflects the physical and psychosocial consequences of lymphoedema and its relationship to everyday life. ‘Accidental journey’ explains the participants’ experiences with the health care system, including the prevention, treatment and management of their lymphoedema. ‘Ebb and flow of control’ draws upon a range of individual and social elements that influenced the participants’ perceived control over lymphoedema. These conceptual categories were inter-related and contributed to the core category of ‘sense of self’, which describes their perceptions of their identity and roles. Conclusions Results highlight the need for greater clinical and public awareness of lymphoedema as a chronic condition requiring prevention and treatment, and one that has far-reaching effects on physical and psychosocial well-being as well as overall quality of life.

The Working After Cancer Study (WACS): a population-based study of middle-aged workers diagnosed with colorectal cancer and their return to work experiences

Background The number of middle-aged working individuals being diagnosed with cancer is increasing and so too will disruptions to their employment. The aim of the Working After Cancer Study is to examine the changes to work participation in the 12 months following a diagnosis of primary colorectal cancer. The study will identify barriers to work resumption, describe limitations on workforce participation, and evaluate the influence of these factors on health-related quality of life. Methods/Design An observational population-based study has been designed involving 260 adults newly-diagnosed with colorectal cancer between January 2010 and September 2011 and who were in paid employment at the time they were diagnosed. These cancer cases will be compared to a nationally representative comparison group of 520 adults with no history of cancer from the general population. Eligible cases will have a histologically confirmed diagnosis of colorectal cancer and will be identified through the Queensland Cancer Registry. Data on the comparison group will be drawn from the Household, Income and Labour Dynamics in Australia (HILDA) Survey. Data collection for the cancer group will occur at 6 and 12 months after diagnosis, with work questions also asked about the time of diagnosis, while retrospective data on the comparison group will be come from HILDA Waves 2009 and 2010. Using validated instruments administered via telephone and postal surveys, data will be collected on socio-demographic factors, work status and circumstances, and health-related quality of life (HRQoL) for both groups while the cases will have additional data collected on cancer treatment and symptoms, work productivity and cancer-related HRQoL. Primary outcomes include change in work participation at 12 months, time to work re-entry, work limitations and change in HRQoL status. Discussion This study will address the reasons for work cessation after cancer, the mechanisms people use to remain working and existing workplace support structures and the implications for individuals, families and workplaces. It may also provide key information for governments on productivity losses.

A multilevel investigation of inequalities in clinical and psychosocial outcomes for women after breast cancer

Background In Australia, breast cancer is the most common cancer affecting Australian women. Inequalities in clinical and psychosocial outcomes have existed for some time, affecting particularly women from rural areas and from areas of disadvantage. We have a limited understanding of how individual and area-level factors are related to each other, and their associations with survival and other clinical and psychosocial outcomes. Methods/Design This study will examine associations between breast cancer recurrence, survival and psychosocial outcomes (e.g. distress, unmet supportive care needs, quality of life). The study will use an innovative multilevel approach using area-level factors simultaneously with detailed individual-level factors to assess the relative importance of remoteness, socioeconomic and demographic factors, diagnostic and treatment pathways and processes, and supportive care utilization to clinical and psychosocial outcomes. The study will use telephone and self-administered questionnaires to collect individual-level data from approximately 3, 300 women ascertained from the Queensland Cancer Registry diagnosed with invasive breast cancer residing in 478 Statistical Local Areas Queensland in 2011 and 2012. Area-level data will be sourced from the Australian Bureau of Statistics census data. Geo-coding and spatial technology will be used to calculate road travel distances from patients' residence to diagnostic and treatment centres. Data analysis will include a combination of standard empirical procedures and multilevel modelling. Discussion The study will address the critical question of: what are the individual- or area-level factors associated with inequalities in outcomes from breast cancer? The findings will provide health care providers and policy makers with targeted information to improve the management of women with breast cancer, and inform the development of strategies to improve psychosocial care for women with breast cancer.

A randomised trial of a psychosocial intervention for cancer patients integrated into routine care: The PROMPT study (promoting optimal outcomes in mood through tailored psychosocial therapies)

Background Despite evidence that up to 35% of patients with cancer experience significant distress, access to effective psychosocial care is limited by lack of systematic approaches to assessment, a paucity of psychosocial services, and patient reluctance to accept treatment either because of perceived stigma or difficulties with access to specialist psycho-oncology services due to isolation or disease burden. This paper presents an overview of a randomised study to evaluate the effectiveness of a brief tailored psychosocial Intervention delivered by health professionals in cancer care who undergo focused training and participate in clinical supervision. Methods/design Health professionals from the disciplines of nursing, occupational therapy, speech pathology, dietetics, physiotherapy or radiation therapy will participate in training to deliver the psychosocial Intervention focusing on core concepts of supportive-expressive, cognitive and dignity-conserving care. Health professional training will consist of completion of a self-directed manual and participation in a skills development session. Participating health professionals will be supported through structured clinical supervision whilst delivering the Intervention. In the stepped wedge design each of the 5 participating clinical sites will be allocated in random order from Control condition to Training then delivery of the Intervention. A total of 600 patients will be recruited across all sites. Based on level of distress or risk factors eligible patients will receive up to 4 sessions, each of up to 30 minutes in length, delivered face-to-face or by telephone. Participants will be assessed at baseline and 10-week follow-up. Patient outcome measures include anxiety and depression, quality of life, unmet psychological and supportive care needs. Health professional measures include psychological morbidity, stress and burnout. Process evaluation will be conducted to assess perceptions of participation in the study and the factors that may promote translation of learning into practice. Discussion This study will provide important information about the effectiveness of a brief tailored psychological Intervention for patients with cancer and the potential to prevent development of significant distress in patients considered at risk. It will yield data about the feasibility of this model of care in routine clinical practice and identify enablers and barriers to its systematic implementation in cancer settings.

A randomised controlled trial to prevent hospital readmissions and loss of functional ability in high risk older adults: a study protocol

Background Older people have higher rates of hospital admission than the general population and higher rates of readmission due to complications and falls. During hospitalisation, older people experience significant functional decline which impairs their future independence and quality of life. Acute hospital services comprise the largest section of health expenditure in Australia and prevention or delay of disease is known to produce more effective use of services. Current models of discharge planning and follow-up care, however, do not address the need to prevent deconditioning or functional decline. This paper describes the protocol of a randomised controlled trial which aims to evaluate innovative transitional care strategies to reduce unplanned readmissions and improve functional status, independence, and psycho-social well-being of community-based older people at risk of readmission. Methods/Design The study is a randomised controlled trial. Within 72 hours of hospital admission, a sample of older adults fitting the inclusion/exclusion criteria (aged 65 years and over, admitted with a medical diagnosis, able to walk independently for 3 meters, and at least one risk factor for readmission) are randomised into one of four groups: 1) the usual care control group, 2) the exercise and in-home/telephone follow-up intervention group, 3) the exercise only intervention group, or 4) the in-home/telephone follow-up only intervention group. The usual care control group receive usual discharge planning provided by the health service. In addition to usual care, the exercise and in-home/telephone follow-up intervention group receive an intervention consisting of a tailored exercise program, in-home visit and 24 week telephone follow-up by a gerontic nurse. The exercise only and in-home/telephone follow-up only intervention groups, in addition to usual care receive only the exercise or gerontic nurse components of the intervention respectively. Data collection is undertaken at baseline within 72 hours of hospital admission, 4 weeks following hospital discharge, 12 weeks following hospital discharge, and 24 weeks following hospital discharge. Outcome assessors are blinded to group allocation. Primary outcomes are emergency hospital readmissions and health service use, functional status, psychosocial well-being and cost effectiveness. Discussion The acute hospital sector comprises the largest component of health care system expenditure in developed countries, and older adults are the most frequent consumers. There are few trials to demonstrate effective models of transitional care to prevent emergency readmissions, loss of functional ability and independence in this population following an acute hospital admission. This study aims to address that gap and provide information for future health service planning which meets client needs and lowers the use of acute care services.

A randomised, feasibility trial of a tele-health intervention for Acute Coronary Syndrome patients with depression ('MoodCare')

Background Coronary heart disease (CHD) and depression are leading causes of disease burden globally and the two often co-exist. Depression is common after Myocardial Infarction (MI) and it has been estimated that 15-35% of patients experience depressive symptoms. Co-morbid depression can impair health related quality of life (HRQOL), decrease medication adherence and appropriate utilisation of health services, lead to increased morbidity and suicide risk, and is associated with poorer CHD risk factor profiles and reduced survival. We aim to determine the feasibility of conducting a randomised, multi-centre trial designed to compare a tele-health program (MoodCare) for depression and CHD secondary prevention, with Usual Care (UC). Methods Over 1600 patients admitted after index admission for Acute Coronary Syndrome (ACS) are being screened for depression at six metropolitan hospitals in the Australian states of Victoria and Queensland. Consenting participants are then contacted at two weeks post-discharge for baseline assessment. One hundred eligible participants are to be randomised to an intervention or a usual medical care control group (50 per group). The intervention consists of up to 10 × 30-40 minute structured telephone sessions, delivered by registered psychologists, commencing within two weeks of baseline screening. The intervention focuses on depression management, lifestyle factors (physical activity, healthy eating, smoking cessation, alcohol intake), medication adherence and managing co-morbidities. Data collection occurs at baseline (Time 1), 6 months (post-intervention) (Time 2), 12 months (Time 3) and 24 months follow-up for longer term effects (Time 4). We are comparing depression (Cardiac Depression Scale [CDS]) and HRQOL (Short Form-12 [SF-12]) scores between treatment and UC groups, assessing the feasibility of the program through patient acceptability and exploring long term maintenance effects. A cost-effectiveness analysis of the costs and outcomes for patients in the intervention and control groups is being conducted from the perspective of health care costs to the government. Discussion This manuscript presents the protocol for a randomised, multi-centre trial to evaluate the feasibility of a tele-based depression management and CHD secondary prevention program for ACS patients. The results of this trial will provide valuable new information about potential psychological and wellbeing benefits, cost-effectiveness and acceptability of an innovative tele-based depression management and secondary prevention program for CHD patients experiencing depression.

Australian higher education evaluation through assurance of learning

A collaborative research project conducted by five Australian universities inquired into the philosophy and motivation for Assurance of Learning (AoL) as a process of education evaluation. Associate Deans Teaching and Learning representing Business schools from twenty-five universities across Australia participated in telephone interviews. Data was analysed using NVIVO9. Results indicated that articulated rationale for AoL was both ensuring that students had acquired the attributes and skills the universities claimed they had, and the philosophy of continuous improvement. AoL was motivated both by ritualistic objectives to satisfy accreditation requirements and virtuous agendas for quality improvement. Closing-the-loop was emphasised, but was mostly wishful thinking for next steps beyond data collection and reporting. AoL was conceptualised as one element within the larger context of quality review, but there was no evidence of comprehensive frameworks or strategic plans.

Strategies to engage academics in assuring graduate attributes

Assurance of learning (AoL) is a predominant feature in both quality assurance and quality enhancement in higher education. The process may be used for program development, and to inform external accreditation and evaluation bodies. However, there is an obvious challenge in trying to get academic staff to buy into the benefits of the AoL process. This project conducted an audit across 25 Australian Business Schools. The majority of those interviewed stated that academic staff considered AoL to be extra work and viewed the process as a box ticking exercise for external bodies rather than sound educational practice. A change management process is required to promote the necessary cultural change to embed AoL into practice. This paper showcases some of the educational leadership strategies that have been successfully implemented across Australia to foster staff engagement in the AoL process. These include: strong senior management commitment and leadership demonstrating a constant and high level drive for staff engagement until AoL becomes an institutional norm; developing leadership and champions among unit and program level staff, to share practices and promote the benefits that come from engaging in the process; providing professional development opportunities to discuss and resolve difficulties and tensions around AoL; demonstrating success and effectiveness by selling staff on the evidence that AoL makes a difference; and making the process inclusive with academics collaborating in the development and implementation of the process.

Hospital to home outreach for malnourished elders (HHOME) : a feasibility pilot

Objectives: Malnutrition is common in older hospitalised patients, and barriers to adequate intake in hospital limit the effectiveness of hospital-based nutrition interventions. This pilot study was undertaken to determine whether nutrition-focussed care at discharge and in the early post-hospital period is feasible and acceptable to patients and carers, and improves nutritional status. Design: Prospective cohort study Setting: Internal medicine wards of a tertiary teaching hospital in Brisbane, Australia Participants: Patients aged 65 and older admitted for at least 3 days, identified as malnourished or at risk of malnutrition using Mini Nutritional Assessment (MNA). Interventions: An interdisciplinary discharge team (specialist discharge planning nurse and accredited practicing dietitian) provided nutrition-focussed education, advice, service coordination and follow-up (home visits and telephone) for 6 weeks following hospitalisation Measurements: Nutritional intake, weight, functional status and MNA were recorded 6 and 12 weeks after discharge. Service intensity and changes to care were noted, and hospital readmissions recorded. Service feedback from patients and carers was sought using a brief questionnaire. Results: 12 participants were enrolled during the 6 week pilot (mean age 82 years, 50% male). All received 1-2 home visits, and 3-8 telephone calls. Four participants had new community services arranged, 4 were commenced on oral nutritional supplements, and 7 were referred to community dietetics services for follow-up. Two participants had a decline in MNA score of more than 10% at 12 week follow-up, while the remainder improved by at least 10%. Individualised care including community service coordination was valued by participants. Conclusion: The proposed model of care for older adults was feasible, acceptable to patients and carers, and associated with improved nutritional status at 12 weeks for most participants. The pilot data will be useful for design of intervention trials.

Pathways for developing a 'smart' workforce : does the achievement of formal workplace qualifications encourage participation in higher education?

The purpose of this paper is to investigate a public workforce education initiative in the context of State and agency policies designed to enhance employee capabilities to adapt to a volatile and changing environment. In particular, we are concerned with public employees’ experience of a higher educational pathway that resulted in their obtaining a Diploma level qualification. In addition to understanding the employees’ experience of this pathway we were interested in whether the experience contributed to their openness to the prospect of university level education. We conducted telephone interviews with a sample of participants from the program. Employees reported very positive experience of the program; in particular employees reported enhanced efficacy beliefs, a strong sense of achievement, and a feeling of recognition. This experience is explained by four main factors; (1) a program design that was well aligned with the employees learning needs, (2) strong support by organisational staff who delivered and assessed participants on capability criteria, (3) strong management support for employees’ participation, (4) an academic ceremony that provided participants with public recognition of their achievement by valued others. Participants’ motivation to participate was primarily intrinsic rather than extrinsic. Participants in the study reported that their experience in this educational pathway gave them the confidence to consider the possibility of university level education. The paper also discusses the practitioner-academic collaboration that led to the development of this paper.

A select and annotated bibliography of nonprofit taxation

It seems likely that the Industry Commission Inquiry on Charitable Organisations will include a reference to examine the state of taxation and charities. There will no doubt be discussions on the taxation benefits enjoyed by charities. These benefits include not only the exemption from being liable for income tax and enjoying the status of being a "deductible body" for the purpose of gifts, but also fringe benefits tax, sales tax, land tax, stamp duty, financial institutions duty, local government rates and charges as well as electricity, gas, telephone and motor vehicle concessions.

Sentencing and public confidence : results from a national Australian survey on public opinions towards sentencing

This paper examines the critical issue of public confidence in sentencing, and presents findings from Phase I of an Australia-wide sentencing and public confidence project. Phase I comprised a nationally representative telephone survey of 6005 participants. The majority of respondents expressed high levels of punitiveness and were dissatisfied with sentences imposed by the courts. Despite this, many were strongly supportive of the use of alternatives to imprisonment for a range of offences. These nuanced views raise questions regarding the efficacy of gauging public opinion using opinion poll style questions; indeed the expected outcome from this first phase of the four phase sentencing and public confidence project. The following phases of this project, reported on elsewhere, examined the effects of various interventions on the robustness and nature of these views initially expressed in a standard ‘top of the head’ opinion poll.

Designing a self-service technology to increase self-efficacy and maintain breastfeeding

Despite the significant health benefits attributed to breastfeeding, rates in countries, such as Australia, continue to remain static or to decline. Typically, the tangible support offered for women to support breastfeeding behaviours takes the form of face-to-face advice from health professionals, peer counselling via not-for-profit organizations such as the ABA, and provision of information through websites, pamphlets, and books. Prior research indicates that face-to-face support is more effective than telephone contact (Britton, McCormic, Renfrew, Wade, & King, 2009). Given the increasing costs associated with the provision of personalized face-to-face professional support and the need for some women to maximize privacy, discretion, and judgment-free consultations, there is a gap that could be filled by the use of m-technologies such as text messaging and other social media. The research team developed MumBubConnect; a two-way SMS system which combined the personalized aspects of face-to-face contact but maintained levels of privacy. The use of SMS was immediate, portable, and overcame many of the barriers associated with embarrassment. An Page 205 of 312 online survey of 130 breastfeeding mothers indicated that MumBubConnect facilitated the seeking of social support using m-technology, increased self-efficacy and maintained the desire behaviour.

Challenges for researchers investigating contraceptive use and pregnancy intentions of young women living in urban and rural Australia : face-to-face discussions to increase participation in a web-based survey

Background: It is imperative to understand how to engage young women in research about issues that are important to them. There is limited reliable data on how young women access contraception in Australia especially in rural areas where services may be less available. Objective: This paper identifies the challenges involved in engaging young Australian women aged 18-23 years to participate in a web-based survey on contraception and pregnancy and ensure their ongoing commitment to follow-up web-based surveys. Methods: A group of young women, aged 18-23 years and living in urban and rural New South Wales, Australia, were recruited to participate in face-to-face discussions using several methods of recruitment: direct contact (face-to-face, telephone or email)and snowball sampling by potential participants inviting their friends. All discussions were transcribed verbatim and analyzed using thematic analysis. Results: Twenty young women participated (urban, n=10: mean age 21.6 years; rural, n=10: 20.0 years) and all used computers or smart phones to access the internet on a daily basis. All participants were concerned about the cost of internet access and utilized free access to social media on their mobile phones. Their willingness to participate in a web-based survey was dependent on incentives with a preference for small financial rewards. Most participants were concerned about their personal details and survey responses remaining confidential and secure. The most appropriate survey would take up to 15 minutes to complete, be a mix of short and long questions and eye-catching with bright colours. Questions on the sensitive topics of sexual activity, contraception and pregnancy were acceptable if they could respond with “I prefer not to answer”. Conclusions: There are demographic, participation and survey design challenges in engaging young women in a web-based survey. Based on our findings, future research efforts are needed to understand the full extent of the role social media and incentives play in the decision of young women to participate in web-based research.

A business model for an inclusive entrepreneurial development

In 2004 Prahalad made managers aware of the great economic opportunity that the population at the BoP (Base of the Pyramid) represents for business in the form of new potential consumers. However, MNCs (Multi-National Corporations) generally continue to penetrate low income markets with the same strategies used at the top of the pyramid or choose not to invest at all in these regions because intimidated by having to re-envision their business models. The introduction of not re-arranged business models and products into developing countries has done nothing more over the years than induce new needs and develop new dependencies. By conducting a critical review of the literature this paper investigates and compares innovative approaches to operate in developing markets, which depart from the usual Corporate Social Responsibility marketing rhetoric, and rather consider the potential consumer at the BoP as a ring of continuity in the value chain − a resource that can itself produce value. Based on the concept of social embeddedness (London & Hart, 2004) and the principle that an open system contemplates different provisions (i.e. MNCs bring processes and technology, NGOs cultural mediating skills, governments laws and regulations, native people know-how and traditions), this paper concludes with a new business model reference that empowers all actors to contribute to value creation, while allowing MNCs to support local growth by turning what Prahalad called ‘inclusive capitalism’ into a more sustainable ‘inclusive entrepreneurial development’.