Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s Sarcoma

Objective: To investigate family members’ experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child’s diagnosis with Ewing’s sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case–control study of Ewing’s sarcoma. Main outcome measures: Participants’ views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other “gatekeepers”, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

Ethics and public health

Note: see later edition of this work at http://eprints.qut.edu.au/47632/ This chapter introduces you to the basic ethical principles that underpin public health practice. The themes to be considered in this chapter include: the characteristics of ‘ethics’, the justification for reflecting on ethics and values, the foundations of public health ethics, whether and how we can incorporate ethics and values into our practice and the nature of some of the potential ethical complications of public health practice.

The regulation of health professionals

This chapter is about the role of law in the management of the health workforce in Australia. Health professionals play an important role in the health system as the providers of treatment and care — without health professionals health systems would not function. The relationship between health professionals and patients has always been complex and is often subject to some form of regulation by the state. The first surviving written reference to such legal regulation dates from 1795-1750 BCE when the Babylonian Code of Hammurabi stated: “If a physician make a large incision with the operating knife, and kill him, or open a tumor with the operating knife, and cut out the eye, his hands shall be cut off.” Alexander the Great recommended the crucifixion of health professionals who killed their patients. Fortunately, the law in Australia prescribes lesser penalties for erring health professionals, but at the heart of modern regulation are similar concerns to those that underpinned the ancient Babylonian Code — to create conditions to ensure the safety of patients and the provision of quality services by health professionals.

Assessment of oral proficiency in EAP programs : a case for pair interaction

Reliability and validity in the testing of spoken language are essential in order to assess learners' English language proficiency as evidence of their readiness to begin courses in tertiary institutions. Research has indicated that the task chosen to elicit language samples can have a marked effect on both the nature of the interaction, including the power differential, and assessment, raising the issue of ethics. This exploratory studey, with a group of 32 students from the Peoples's Republic of China preparing for tertiary study in Singapore, compares test-takers' reactions to the use of an oral proficiency interview and a pair interaction.

Expanding ethical vistas of IT professionals

In this paper we argue for an experientially grounded view of IT professionals’ ethical formation and support. We propose that for such formation and support to be effectual, it should challenge professionals’ conceptualisations of their field and of ethics, and it should do so with the aim of changing their experience. To this end, we present a Model of Ethical IT, which is based on an examination of the nature of ethics and on empirical findings concerning IT professionals’ experience of ethics. We argue that for IT professionals to be enabled to become more ethical in their practice: the purpose of IT must be primarily understood to be user-oriented; the nature of professional ethics must be primarily understood to be other-centred; and the goal of ethics education must be understood as primarily promoting a change in awareness.

Valuing the impact of the teacher librarian from an evidence base

Evidence-based practice as it applies to the Library and Information (LIS) sector and in particular teacher librarians is the focus of this research investigation. The context for this research is Australian school libraries and teacher librarians. This is a research in progress and the report here will include some very early findings and lessons learned from the initial pilot study. The contributions of this research will be in developing a framework for the library and information sector with a particular application for teacher librarians. Providing meaningful evidence of work practices that demonstrate contributions to the schools goals and mission statements in conjunction with contributions to student academic, social and cultural achievements are crucial for the future of the teacher librarian.

Franchisor failure : an assessment of the adequacy of regulatory response

Franchisor failure is one of the most problematic areas of the franchise relationship. It impacts negatively on landlords and other suppliers, but the contracting parties that are currently without legal rights to respond when a franchisor fails, and thus without consumer protection, are its franchisees. In this thesis I explore the current contractual, regulatory and commercial environment that franchisees inhabit, within the context of franchisor failure. I conclude that ex ante there are opportunities to level the playing field through consumer protection legislation. I also conclude that the task is not one solely for the consumer protection legislation; the problem should also be addressed ex post through the Corporations Act.

Designing for participation in local social ridesharing networks : grass roots prototyping of IT systems

This abstract explores the possibility of a grass roots approach to engaging people in community change initiatives by designing simple interactive exploratory prototypes for use by communities over time that support shared action. The prototype is gradually evolved in response to community use, fragments of data gathered through the prototype, and participant feedback with the goal of building participation in community change initiatives. A case study of a system to support ridesharing is discussed. The approach is compared and contrasted to a traditional IT systems procurement approach.

Experiential ethics education for IT professionals

This chapter presents a new approach to IT ethics education that may be used by teachers in academic institutions, employees responsible for promoting ethics in organisations and individuals wanting to pursue their own professional development. Experiential ethics education emphasises deep learning that prompts a changed experience of ethics. We first consider how this approach complements other ways of engaging in ethics education. We then explore what it means to strive for experiential change and offer a model which may be useful in pursuing IT professional ethics education in this way.

Mapping the ethical journey of experienced nurses now practising in rural and remote hospitals in central and south-west Queensland and in domiciliary services in Brisbane : a grounded theory approach

The aim of this thesis has been to map the ethical journey of experienced nurses now practising in rural and remote hospitals in central and south-west Queensland and in domiciliary services in Brisbane. One group of the experienced nurses in the study were Directors of Nursing in rural and remote hospitals. These nurses were “hands on”, “multi-skilled “ nurses who also had the task of managing the hospital. Also there were two Directors of Nursing from domiciliary services in Brisbane. A grounded theory method was used. The nurses were interviewed and the data retrieved from the interviews was coded, categorised and from these categories a conceptual framework was generated. The literature which dealt with the subject of ethical decision making and nurses also became part of the data. The study revealed that all these nurses experienced moral distress as they made ethical decisions. The decision making categories revealed in the data were: the area of financial management; issues as end of life approaches; allowing to die with dignity; emergency decisions; experience of unexpected death; the dilemma of providing care in very difficult circumstances. These categories were divided into two chapters: the category related to administrative and financial constraints and categories dealing with ethical issues in clinical settings. A further chapter discussed the overarching category of coping with moral distress. These experienced nurses suffered moral distress as they made ethical decisions, confirming many instances of moral distress in ethical decision making documented in the literature to date. Significantly, the nurses in their interviews never mentioned the ethical principles used in bioethics as an influence in their decision making. Only one referred to lectures on ethics as being an influence in her thinking. As they described their ethical problems and how they worked through them, they drew on their own previous experience rather than any knowledge of ethics gained from nursing education. They were concerned for their patients, they spoke from a caring responsibility towards their patients, but they were also concerned for justice for their patients. This study demonstrates that these nurses operated from the ethic of care, tempered with the ethic of responsibility as well as a concern for justice for their patients. Reflection on professional experience, rather than formal ethics education and training, was the primary influence on their ethical decision making.

Enhancing professional ethics : service-learning in teacher education

The ethical conduct of professionals has been the focus of increasing scrutiny over the past several decades as members of the public, the media, professional bodies, and legislative authorities have struggled to define ethical behaviour in times of governmental change, increasing internationalisation, globalised communications, threats of terrorism, and the challenges of developments in science and medicine (e.g., Demmke & Bossaert, 2004). National governments and transnational bodies have responded to these concerns about ethics and corruption through measures such as the United Nations Convention Against Corruption (United Nations Office on Drugs and Crime, 2004), Transparency International’s annual corruption index (2010) and Queensland’s Public Sector Ethics Act 1994 (Queensland Parliament 1994). Similarly, academic interest in ethics and its application across a range of domains(e.g., business, health care, social welfare, criminal justice, law, journalism, defence, environment, and media) has also increased. To illustrate, in 1993, a non-partisan, non-profit national umbrella organisation, the Australian Association for Professional and Applied Ethics, was formed following a conference concerned with the teaching of ethics (http://www.arts.unsw.edu.au./aapae/about_aapae/about_aapae.htm), while a recent review of the Excellence in Research for Australian rankings of national and international academic journals revealed that 16 journals related to ethics had received the top ratings of A* or A (Australian Research Council, 2009). In this chapter we examine professional ethics and argue, with specific reference to the context of pre-service teacher education, that Service-learning is one way of enhancing emerging professionals’ understanding of ethics.

Assessing the awareness and importance of housing sustainability in Queensland

Sustainability has been a major factor and determinant of commercial property design, construction, retro-fitting and landlord and tenant requirements over the last decade, supported by the introduction of rating tools such as NABERS and GreenStar and the recently mandated Building Energy Efficiency Certificate (BEEC). However, the movement to sustainable and energy efficient housing has not been established for the same period, and although mandatory building regulations have been in place for new residential housing construction since 2004, the requirement to improve the sustainability and energy efficiency of housing constructed prior to 2004 has not been mandatory. Residential dwelling energy efficiency and rating schemes introduced in Australia over the past decade have included rating schemes such as BASIX, NatHERS, First rate, ACTHERS, and Building Code of Australia and these have applied to new dwelling construction. At both National and State level the use of energy efficiency schemes for existing residential dwellings has been voluntary and despite significant cash incentives have not always been successful or achieved widespread take-up. In 2010, the Queensland Government regulated that all homes offered for sale, whether a new or existing dwellings require the seller to provide a ―sustainability declaration‖ that provides details of the sustainability measures associated with the dwelling being sold. The purpose of this declaration being to inform buyers and increase community awareness of home sustainability features. This paper uses an extensive review of real estate marketing material, together with a comprehensive survey of real estate agents to analyse the current market compliance, awareness and acceptance of existing green housing regulations and the importance that residential property owners and purchasers place on energy efficient and sustainable housing. The findings indicate that there is still little community awareness or concern of sustainable housing features when making home purchase decisions.

Ethics and public health

• recognise that “ethics” is often defined and approached in different ways • describe the foundations and development of public health ethics • summarise some key ethical systems and their relevance to public health practice • outline and critique some codes of ethics, and discuss their application to public health practice • recognise, evaluate and communicate ethical concerns regarding public health, and apply ethical principles in your practice.

Sustainable housing: family experiences with supply chain ethics

Climate change, resource depletion and increasing urbanization are converging global issues that are challenging the way we design, construct and operate buildings. The housing sector is a significant contributor to these global issues through consumption of limited resources, waste generation and disposal (solid, liquid and atmospheric waste) and negative human health impacts (Senick 2006). Although the design and construction of ‘sustainable housing’ would appear to be an obvious and technically feasible solution, there remains multi-faceted issues affecting the delivery of sustainable housing (Holloway and Bunker 2006). Two fundamental issues - what makes a house sustainable, and to what extent regulation should be used to deliver sustainability - have been, and continue to be, debated at multiple levels in society. Despite personal, professional and political views on these issues, three key characteristics of the whole housing supply chain require fundamental change if we are to successfully address sustainability challenges (Birkeland 2008). These include: fragmentation; established methods, practices and processes, and the relationships between players. A more in-depth understanding of the role of ethics (values, beliefs and standards) and potential ethical conflicts within the supply chain will assist in better defining the nature of the fundamental changes required...

What health problems overcrowd hospital emergency departments in Queensland and has this changed over time? A case study of two hospitals in Queensland 2001 - 2009

Aim: to describe what health problems patients attending emergency department with and whether this changed over time. Methods: Electronic data was retrieved from EDIS (Emergency Department Information System) and HBCIS (Hospital Based Clinical Information System) in two hospitals in Queensland in the period 2001-2009. The ICD-10 code of patient's diagnosis was then extrapolated and then group into ICD-10 chapters, such that the health problem can be presented. Results: Among the specific health problems, Chapter XIX 'Injury and poisoning' ranked number one consistently (ranging from 22.1% to 31.2% of the total presentations) in both the urban and remote hospitals in Queensland. The top ten specific presenting health problems in both the urban and remote hospital include Chapter XI 'Digestive system', Chapter XIV 'Genitourinary system', Chapter IX 'Circulatory system', and Chapter XIII 'Musculoskeletal system and connective tissue'. Chapter X 'Respiratory system' made the top ten presenting Chapters in both hospitals, but ranked much higher (number four consistently for the eight years, ranging from 6.8% to 8.3%) in the remote hospital. Chapter XV 'Pregnancy childbirth and puerperium' made to the top ten in the urban hospital only while Chapter XII 'Skin and subcutaneous tissue', Chapter I 'Infectious and parasitic diseases' made the top ten in the remote hospital only. Conclusion: The number one health problem presenting to both the urban and remote hospitals in Queensland is Chapter XIX 'Injury and poisoning', and it did not change in the period 211 - 2009.