Information needs of family carers of people with diabetes at the end of life: a literature review

Background:
Recent research identified the issue that family carers of people with diabetes at the end of life (EOL) did not receive sufficient information to enable them to help their relative manage their diabetes at the EOL.

Aim:
The aim of the current study was to undertake a literature review to identify the information needs of family carers of people with diabetes at the EOL.

Method:
A comprehensive review of the literature was conducted by searching the following databases: CINAHL, PubMed, PsychInfo, Scopus, and SocINDEX. The grey literature was also searched for papers relevant to the aim. All study designs were included. A content analysis of relevant papers was undertaken to identify themes.

Results:
Sixteen of the more than 300 papers identified addressed the information needs of family carers of people with diabetes at the EOL and were included in the review. Five key themes were identified from the papers reviewed: (1) performing diabetes care tasks, (2) focus of care, (3) blood glucose management, (4) EOL stages, and (5) involving patients and family carers in decisions about diabetes care. Most of the 16 papers represented the views of health professionals and focused on the need to provide information about the medical aspects of diabetes management.

Conclusions:The review suggests further research is needed to identify the information needs of family carers of people with diabetes at the EOL to enable interventions to be developed to support the family carers and meet their unique information needs.

The end of the rainbow

The End of the Rainbow is a documentary film about music, about community and a very special place. When the live music venue “The Rainbow Hotel” in the Melbourne suburb of Fitzroy is forced to close down publican Chickk sets out to accommodate the many musicians and customers grieving its closure with a final week of musical activity in which there is organisational chaos, dancing, laughs, beer (lots of), and great music. It is a week of celebration as musicians pay homage to mark “the End of an Era”, but it is also a statement about community places and a protest against property development at the expense of cultural heritage, specifically Australian live music. It’s also a love story with a dramatic twist...

The limitations of front-end loading in undergraduate university programs

This paper shows how Mead’s theory of emergence can prove explanatory in how the theory-practice gap is co-created and sustained in front-end loading university programs. Taking teacher education as an exemplar, we argue that the trainee teacher encounters different and oft-times conflicting environmental, social and cultural conditions in the two “fields of interaction” of the training program, namely, on-campus work and in-school experience. The argument draws on interview and focus group data collected via a study of first-year graduate teachers of an Australian teacher education program. We conclude that role taking and self-regulated behaviour within the two environmental fields of interaction in front-end loading programs inhibit the trainee professional from exercising the power of agency to implement theory learned at university in practice in the workplace. Further, we propose that Mead’s theory of emergence proves effective in explaining a major limitation of front-end-loaded university programs.

The limitations of front-end loading in undergraduate university programs

This paper shows how Mead’s theory of emergence can prove explanatory in how the theory-practice gap is co-created and sustained in front-end loading university programs. Taking teacher education as an exemplar, we argue that the trainee teacher encounters different and oft-times conflicting environmental, social and cultural conditions in the two “fields of interaction” of the training program, namely, on-campus work and in-school experience. The argument draws on interview and focus group data collected via a study of first-year graduate teachers of an Australian teacher education program. We conclude that role taking and self-regulated behaviour within the two environmental fields of interaction in front-end loading programs inhibit the trainee professional from exercising the power of agency to implement theory learned at university in practice in the workplace. Further, we propose that Mead’s theory of emergence proves effective in explaining a major limitation of front-end-loaded university programs.

Mothers requiring dialysis: parenting and end-stage kidney disease

Background
Mothers requiring dialysis to treat end-stage kidney disease face the challenging demands of the disease and dialysis treatment in addition to their role as a parent.

Objective
To describe the experience of mothers who require haemodialysis.

Methods
Four mothers receiving haemodialysis treatment for end-stage kidney disease in regional Australia were interviewed to explore the mothers' experiences, attitudes, beliefs and values of their dual role as mothers and haemodialysis recipients.

Results
The overarching theme emerging from the data was the competing roles of motherhood and dialysis. Four key sub-themes emerged: fitting everything in, internal family challenges, lost connections and striving for normality.

Conclusion
Being a mother adds a range of complexities to being on dialysis. While managing dialysis, mothers struggle to care for their children and stay connected with family life. Nephrology health professionals are uniquely placed to support mothers and need to develop strategies to ease their burdens of care.

The study protocol of: 'initiating end of life care in stroke: clinical decision- making around prognosis'

 Background: The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.
Methods/design: This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.
Discussion: This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

Resistance and resilience: Can the abrupt end of extreme drought reverse avifaunal collapse?

Aim: Climate change is expected to increase the frequency and intensity of extreme climatic events, such as severe droughts and intense rainfall periods. We explored how the avifauna of a highly modified region responded to a 13-year drought (the 'Big Dry'), followed by a two-year period of substantially higher than average rainfall (the 'Big Wet'). Location: Temperate woodlands in north central Victoria, Australia. Methods: We used two spatially extensive, long-term survey programmes, each of which was repeated three times: early and late in the Big Dry, and in the Big Wet. We compared species-specific changes in reporting rates between periods in both programmes to explore the resistance (the ability to persist during drought) and resilience (extent of recovery post-drought) of species to climate extremes. Results: There was a substantial decline in the reporting rates of 42-62% (depending on programme) of species between surveys conducted early and late in the Big Dry. In the Big Wet, there was some recovery, with 21-29% of species increasing substantially. However, more than half of species did not recover and 14-27% of species continued to decline in reporting rate compared with early on in the Big Dry. Species' responses were not strongly related to ecological traits. Species resistance to the drought was inversely related to resilience in the Big Wet for 20-35% of the species, while 76-78% of species with low resistance showed an overall decline across the study period. Conclusions: As declines occurred largely irrespective of ecological traits, this suggests a widespread mechanism is responsible. Species that declined the most during the Big Dry did not necessarily show the greatest recoveries. In already much modified regions, climate extremes such as extended drought will induce on-going changes in the biota. © 2014 John Wiley & Sons Ltd.

‘Moral luck’ and the question of autonomy, choice, and control in end-of-life decision making

It is commonly assumed that, in the realm of ethical decision making at the end-of-life, ‘luck’ and ‘risk’ do not intrude. Nonetheless ‘moral luck’ (where happenstance makes a moral difference) does intrude and can have an unanticipated impact on the ultimate moral outcomes of end-of-life care. In the interests of upholding the ethical standards of end-of-life care, healthcare providers have increasingly relied on ethical principlism as a rational decision-guiding frame in the sincere belief that such an approach will enable patient selfdetermination and control over treatment decisions when needing end-of-life care. Due to contextual variables and associated uncertainties in end-of-life care, however, the intended moral outcomes of appeals to commonly accepted ethical principles (in particular the principle of autonomy) are not always realized. What is not always appreciated is that whether ‘good’ or ‘bad’ moral outcomes are achieved can be as much a matter of chance as of choice. This essay explores the relevance and possible implications of moral luck in end-of-life decision making and care. A key conclusion of the paper is that the notion of moral luck needs to be taken seriously in end-of-life care contexts since it can have an unanticipated impact on the outcomes of the decisions that are made and thereby on the moral interests of patients facing the end of their lives.

Give back peace that will never end: Hibakusha poets as public intellectuals

US censorship of public discussion of the bombings during the Allied Occupation of Japan ensured that the Japanese public knew little about the human consequences of the atomic bombing of Hiroshima and Nagasaki. When hibakusha poets seek a public audience for their poetry, their experiences make them potentially powerful public intellectuals. As Noam Chomsky has observed, the most effective public intellectuals are dissidents who act from the margins. Tōge Sankichi and Kurihara Sadako became activists and their poetry offers a powerful and rousing response to the atomic bombing and lobbies for nuclear disarmament. The simplicity and accessibility of these poems is essential to the public dissemination of their message and Kurihara’s and Tōge’s identification as public intellectuals. This article examines the ways in which hibakusha poets can be recognised as public intellectuals when they seek public audiences for their work. Discussion hinges on a number of considerations centred on public intellectualism, trauma and the uses of language.

Critically impaired infants and end of life decision making : resource allocation and difficult decisions

Decisions to withdraw or withhold life-sustaining treatment are contentious, and offer difficult moral dilemmas to both medical practitioners and the judiciary. This issue is exacerbated when the patient is unable to exercise autonomy and is entirely dependent on the will of others.This book focuses on the legal and ethical complexities surrounding end of life decisions for critically impaired and extremely premature infants. Neera Bhatia explores decisions to withdraw or withhold life-sustaining treatment from critically impaired infants and addresses the controversial question, which lives are too expensive to treat? Bringing to bear such key issues as clinical guidance, public awareness, and resource allocation, the book provides a rational approach to end of life decision making, where decisions to withdraw or withhold treatment may trump other competing interests.The book will be of great interest and use to scholars and students of bioethics, medical law, and medical practitioners.

Validation of the personal wellbeing index for people with end stage kidney disease

The quality of life of people with end stage kidney disease (ESKD) has traditionally been measured using instruments that emphasise objective health status. The present study validates an alternative measure, the Personal Wellbeing Index (PWI), which measures subjective wellbeing. An Australian ESKD sample (N = 172, Mean age = 64.04, SD = 14.82) completed the PWI as well as health-specific quality of life measures. The PWI was subject to confirmatory factor analysis, and a series of regressions and between-group comparisons were performed to reveal that it is a psychometrically appropriate measure for this sample. The PWI and health-specific measures each yield different and complementary results. Thus, the PWI is proposed as a complement to existing health-related quality of life tools, in order to broaden understanding of the patient’s subjective experience. The resulting profile is argued to better inform targeted interventions to improve the quality of life of people with ESKD.

The experiences and needs of family carers of people with diabetes at the end of life

ABSTRACT
Diabetes is a common, increasingly prevalent chronic disease. Many people requiring palliative care have diabetes. Diabetes requires lifelong self-care tasks. Family carers frequently perform these tasks when the person with diabetes is no longer able to perform them, but there is a lack of information about carers’ needs to enable them to undertake their new care tasks. The study aimed to collect information from family carers of people with diabetes requiring palliative care about their views and experiences of managing a family member’s diabetes at the end of life and identify their needs to enable them to undertake diabetes care tasks. Data were collected during individual, semistructured interviews with 10 family members caring for a person with diabetes receiving palliative care. The 4 key themes identified were as follows: I didn’t know what to do: it’s a big responsibility; I need education; and it’s important to manage diabetes. Family members/carers feel anxious about their increasing responsibility when caring for their family member’s diabetes and need information and education to help them monitor and interpret blood glucose levels, mange high or low blood glucose levels, and administer glucose-lowering medicines safely and confidently.

Palliative and end-of-life care for patients with diabetes

Diabetes complications are common and can contribute to unpleasant symptoms, depression and reduced quality of life. A palliative approach to diabetes care in patients with complications, including modified metabolic targets, can reduce symptoms and hospital admissions and improve quality of life and care transitions. GPs have a key role in co-ordinating palliative and end-of-life care in these patients.

Approximation of centroid end-points and switch points for replacing type reduction algorithms

Despite several years of research, type reduction (TR) operation in interval type-2 fuzzy logic system (IT2FLS) cannot perform as fast as a type-1 defuzzifier. In particular, widely used Karnik-Mendel (KM) TR algorithm is computationally much more demanding than alternative TR approaches. In this work, a data driven framework is proposed to quickly, yet accurately, estimate the output of the KM TR algorithm using simple regression models. Comprehensive simulation performed in this study shows that the centroid end-points of KM algorithm can be approximated with a mean absolute percentage error as low as 0.4%. Also, switch point prediction accuracy can be as high as 100%. In conjunction with the fact that simple regression model can be trained with data generated using exhaustive defuzzification method, this work shows the potential of proposed method to provide highly accurate, yet extremely fast, TR approximation method. Speed of the proposed method should theoretically outperform all available TR methods while keeping the uncertainty information intact in the process.

The performance of open-end Brazilian fixed income mutual funds for retail clients

From a financial perspective, this dissertation analyzes the Brazilian mutual fund industry performance for an average retail client. The most representative funds for the local population, that are the fixed income open-end ones, will be selected and their performance will be measured aiming to answer if clients of this industry obtained a proper return over their investments in the period between August 2010 and August 2013. A proper return will be understood as the preservation of the purchasing power of the individual´s savings, what is achieved with a positive performance of a mutual fund after discounting taxes, administrative fees and inflation. After obtaining an answer for the previous question, this dissertation will explore a possible alternative solution: Tesouro Direto, that is an example of a financial approach that could foster the disintermediation between savings and investments through electronic channels. New electronic platforms, with a broader scope, could be utilized to increase the efficiency of funding productive investments through better remunerating Brazilian savings. Tesouro Direto may point towards a new paradigm.