Can we do better? Researchers' experiences with ethical review boards on projects with later life as a focus

The goal of this study was to describe researchers' experiences in submitting ethical proposals focused on older adult populations, including studies with persons with dementia, to ethical review boards. Ethical approval was granted for an online survey. Researchers were recruited via listservs and snowballing techniques. Participants included 157 persons (73% female) from Australia and the United States, with a mean age of 46 (±13). Six main issues were encountered by researchers who participated in this survey. In descending order, these included questions regarding: informed consent and information requirements (61.1%), participants' vulnerability, particularly for those with cognitive impairments (58.6%), participant burden (44.6%), data access (29.3%), adverse effects of data collection/intervention (26.8%), and study methodology (25.5%). An inductive content analysis of responses revealed a range of encounters with ethical review panels spanning positive, negative, and neutral experiences. Concerns voiced about ethical review boards included committees being overly focused on legal risk, as well as not always hearing the voice of older research participants, both potential and actual. Respondents noted inability to move forward on studies, as well as loss of researchers and participant groups from gerontological and clinical research as a result of negative interactions with ethics committees. Positive interactions with the committees reinforced researchers' need to carefully construct their research approaches with persons with dementia in particular. Suggested guidelines for committees when dealing with ethics applications involving older adults include self-reflecting on potential biases and stereotypes, and seeking further clarification and information from gerontological researchers before arriving at decisions.

Work and life balance practices in Bhutan

This research examined formal and informal human resource policies and practices that support work life balance (WLB) in Bhutanese Small and Medium Enterprises (SMEs). Developing countries like Bhutan where small and medium enterprises (SMEs) make up the majority of all enterprises are less likely to encompass formal comprehensive WLB policies that more privileged societies like the US, Canada, Australia, and the UK where the concept of WLB began. Interviews were conducted with 20 employees and 10 employers from 10 SMEs in Bhutan. Results showed that informal practices were the predominant mechanism for employees to manage the multiple roles in their lives. Strong norms of trust between employers and employees supported these informal practices.

Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990-2010: A systematic analysis for the Global Burden of Disease Study 2010

BACKGROUND Measuring disease and injury burden in populations requires a composite metric that captures both premature mortality and the prevalence and severity of ill-health. The 1990 Global Burden of Disease study proposed disability-adjusted life years (DALYs) to measure disease burden. No comprehensive update of disease burden worldwide incorporating a systematic reassessment of disease and injury-specific epidemiology has been done since the 1990 study. We aimed to calculate disease burden worldwide and for 21 regions for 1990, 2005, and 2010 with methods to enable meaningful comparisons over time. METHODS We calculated DALYs as the sum of years of life lost (YLLs) and years lived with disability (YLDs). DALYs were calculated for 291 causes, 20 age groups, both sexes, and for 187 countries, and aggregated to regional and global estimates of disease burden for three points in time with strictly comparable definitions and methods. YLLs were calculated from age-sex-country-time-specific estimates of mortality by cause, with death by standardised lost life expectancy at each age. YLDs were calculated as prevalence of 1160 disabling sequelae, by age, sex, and cause, and weighted by new disability weights for each health state. Neither YLLs nor YLDs were age-weighted or discounted. Uncertainty around cause-specific DALYs was calculated incorporating uncertainty in levels of all-cause mortality, cause-specific mortality, prevalence, and disability weights. FINDINGS Global DALYs remained stable from 1990 (2·503 billion) to 2010 (2·490 billion). Crude DALYs per 1000 decreased by 23% (472 per 1000 to 361 per 1000). An important shift has occurred in DALY composition with the contribution of deaths and disability among children (younger than 5 years of age) declining from 41% of global DALYs in 1990 to 25% in 2010. YLLs typically account for about half of disease burden in more developed regions (high-income Asia Pacific, western Europe, high-income North America, and Australasia), rising to over 80% of DALYs in sub-Saharan Africa. In 1990, 47% of DALYs worldwide were from communicable, maternal, neonatal, and nutritional disorders, 43% from non-communicable diseases, and 10% from injuries. By 2010, this had shifted to 35%, 54%, and 11%, respectively. Ischaemic heart disease was the leading cause of DALYs worldwide in 2010 (up from fourth rank in 1990, increasing by 29%), followed by lower respiratory infections (top rank in 1990; 44% decline in DALYs), stroke (fifth in 1990; 19% increase), diarrhoeal diseases (second in 1990; 51% decrease), and HIV/AIDS (33rd in 1990; 351% increase). Major depressive disorder increased from 15th to 11th rank (37% increase) and road injury from 12th to 10th rank (34% increase). Substantial heterogeneity exists in rankings of leading causes of disease burden among regions. INTERPRETATION Global disease burden has continued to shift away from communicable to non-communicable diseases and from premature death to years lived with disability. In sub-Saharan Africa, however, many communicable, maternal, neonatal, and nutritional disorders remain the dominant causes of disease burden. The rising burden from mental and behavioural disorders, musculoskeletal disorders, and diabetes will impose new challenges on health systems. Regional heterogeneity highlights the importance of understanding local burden of disease and setting goals and targets for the post-2015 agenda taking such patterns into account. Because of improved definitions, methods, and data, these results for 1990 and 2010 supersede all previously published Global Burden of Disease results.

A multimodal physiotherapy programme plus deep water running for improving cancer-related fatigue and quality of life in breast cancer survivors

The aim of the study was to assess the feasibility and effectiveness of aquatic‐based exercise in the form of deep water running ( DWR ) as part of a multimodal physiotherapy programme ( MMPP ) for breast cancer survivors. A controlled clinical trial was conducted in 42 primary breast cancer survivors recruited from community‐based P rimary C are C entres. Patients in the experimental group received a MMPP incorporating DWR , 3 times a week, for an 8‐week period. The control group received a leaflet containing instructions to continue with normal activities. Statistically significant improvements and intergroup effect size were found for the experimental group for P iper F atigue S cale‐ R evised total score ( d = 0.7, P = 0.001), as well as behavioural/severity ( d = 0.6, P = 0.05), affective/meaning ( d = 1.0, P = 0.001) and sensory ( d = 0.3, P = 0.03) domains. Statistically significant differences between the experimental and control groups were also found for general health ( d = 0.5, P < 0.05) and quality of life ( d = 1.3, P < 0.05). All participants attended over 80% of sessions, with no major adverse events reported. The results of this study suggest MMPP incorporating DWR decreases cancer‐related fatigue and improves general health and quality of life in breast cancer survivors. Further, the high level of adherence and lack of adverse events indicate such a programme is safe and feasible.

Life is too short to RTFM : how users relate to documentation and excess features in consumer products

This paper addresses two common problems that users of various products and interfaces encounter— over-featured interfaces and product documentation. Over-featured interfaces are seen as a problem as they can confuse and over-complicate everyday interactions. Researchers also often claim that users do not read product documentation, although they are often exhorted to ‘RTFM’(read the field manual).We conducted two sets of studies with users which looked at the issues of both manuals and excess features with common domestic and personal products. The quantitative set was a series of questionnaires administered to 170 people over 7 years. The qualitative set consisted of two 6-month longitudinal studies based on diaries and interviews with a total of 15 participants. We found that manuals are not read by the majority of people, and most do not use all the features of the products that they own and use regularly. Men are more likely to do both than women, and younger people are less likely to use manuals than middle-aged and older ones. More educated people are also less likely to read manuals. Over-featuring and being forced to consult manuals also appears to cause negative emotional experiences. Implications of these findings are discussed.

A recommendation system for predicting risks across multiple business process instances

This paper proposes a recommendation system that supports process participants in taking risk-informed decisions, with the goal of reducing risks that may arise during process execution. Risk reduction involves decreasing the likelihood and severity of a process fault from occurring. Given a business process exposed to risks, e.g. a financial process exposed to a risk of reputation loss, we enact this process and whenever a process participant needs to provide input to the process, e.g. by selecting the next task to execute or by filling out a form, we suggest to the participant the action to perform which minimizes the predicted process risk. Risks are predicted by traversing decision trees generated from the logs of past process executions, which consider process data, involved resources, task durations and other information elements like task frequencies. When applied in the context of multiple process instances running concurrently, a second technique is employed that uses integer linear programming to compute the optimal assignment of resources to tasks to be performed, in order to deal with the interplay between risks relative to different instances. The recommendation system has been implemented as a set of components on top of the YAWL BPM system and its effectiveness has been evaluated using a real-life scenario, in collaboration with risk analysts of a large insurance company. The results, based on a simulation of the real-life scenario and its comparison with the event data provided by the company, show that the process instances executed concurrently complete with significantly fewer faults and with lower fault severities, when the recommendations provided by our recommendation system are taken into account.

Bushfire responsive design : reconciling biodiversity conservation and bushfire safety with daily life

30 minute invited presentation on design-led bushfire risk mitigatition stategies for reconciling the two (otherwise) opposing managment goals of bushfire safety and biodiversity conservation. Targeted at the S E Queensland national audience participants.

Factors influencing the provision of end-of-life care in critical care settings : development and testing of a survey instrument

Aim. To develop and psychometrically test a survey instrument to identify the factors influencing the provision of end-of-life care by critical care nurses. Background. Following a decision to withdraw life-sustaining treatment, critical care nurses remain with the patient and their family providing end-of-life care. Identification of factors influencing the provision of this care can give evidence to inform practice development and support nurses. Design. A cross-sectional survey of critical care nurses. Method. An online survey was developed, reviewed by an expert panel and pilot tested to obtain preliminary evidence of its reliability and validity. In May 2011, a convenience sample of critical care nurses (n = 392, response rate 25%) completed the survey. The analytical approach to data obtained from the 58 items measured on a Likert scale included exploratory factor analysis and descriptive statistics. Results. Exploratory factor analysis identified eight factors influencing the provision of end-of-life care: emotional support for nurses, palliative values, patient and family preferences, resources, organizational support, care planning, knowledge and preparedness. Internal consistency of each latent construct was deemed satisfactory. The results of descriptive statistics revealed a strong commitment to the inclusion of families in end-of-life care and the value of this care in the critical care setting. Conclusion. This paper reports preliminary evidence of the psychometric properties of a new survey instrument. The findings may inform practice development opportunities to support critical care nurses in the provision of endof- life care and improve the care that patients and their families receive.

Religion and life satisfaction: Evidence from Germany

We examined the association between religious involvement and life satisfaction using data drawn from the 2003, 2007, and 2011 waves of the German Socio-Economic Panel. Our study provides evidence of an association between attendance at religious services and life satisfaction for respondents residing in West Germany. While social networks partially mediate this relationship for West Germany, there appears to be a remaining direct impact of attendance on life satisfaction. On the contrary, we find no evidence of an association between attendance at religious services and life satisfaction for respondents residing in East Germany.