Creating collaborative spaces : the pleasures and perils of doing multi-disciplinary, multi-partner qualitative research

This paper describes our experience of managing a two-year research project that involved University staff from two different disciplines and three industry partners. It describes the benefits we gained from the involvement of multiple parties, such as the ability to call upon diverse expertise, the capacity to study a complex issue and the ability to make a direct contribution to industry practice. It also describes some of the difficulties such as managing across University structures, maintaining the collaborators' interest in the project, gaining approval from multiple ethics committees and managing the expectations of various stakeholders. The paper concludes with a number of recommendations for senior University staff and for researchers and points to ways universities could better facilitate involvement in these types of complex research projects.

The regulation of research by funding bodies : an emerging ethical issue for the alcohol and other drug sector?

The degree to which funding bodies can and do control the content and dissemination of research products raises important issues which need to be openly debated by the alcohol and other drug (AOD) sector. Current policies relating to censorship and other means of controlling research topics or output are explored alongside an examination of how some institutions, particularly some academic journals, deal with such issues. We argue that regulation of research by funding bodies clearly contravenes the scientific ideal of freedom of information and open access to knowledge. Using international ethical guidelines, we also demonstrate that regulation raises concerns in relation to the ethical concept of beneficence. A number of examples specific to harm reduction strategies are presented in order to demonstrate how censorship might conceivably increase the harms associated with drug use. The commentary closes with recommendations concerning the establishment the prevalence of censorship and other forms of control over research in the AOD sector, and the role that ethics committees, journal editorial boards and professional societies might play in resisting the imposition of unacceptable conditions on publication of findings.

Doing research with teachers, parents and students : the ethics and politics of collaborative research

Truly collaborative research partnerships between universities and schools are seldom commonplace (Potter, 2001). Many schools – particularly those in disadvantaged communities – have long histories of being involved in research yet few see themselves with real investment in, ownership of and/or benefiting from the experience. In this chapter we discuss research conceived with more mutually beneficial researcher-researched relations, cognisant of the ‘importance of respecting and ultimately giving more than we take to the communities we research’ (Schultz, 2001, p. 1). The research involved teachers’, parents’ and students’ engagement with schooling in a secondary school in regional Australia. Rather than conducting the research on others, we attempted to craft our project with them. Michelle Fine (1994) argues that a decision to work with those we once might have written about or for, necessarily changes our work, making it both more ethical and more explicitly connected to struggles for social justice. This chapter draws on the voices of the teachers, parents and students we worked with and alongside during the research to explore the ethics and politics of such an approach.

Space, place and race: Ethics in practice for educational research in ethnically diverse rural Australia

Research in Australia’s ethnically diverse rural and regional communities requires an approach that is informed by notions of space, place and culture, and which recognises race as a relational social construct mediated by social and political discourse and context, and prone to change overtime. This critical review examines how teacher education researchers connect culturally competent research and rural ethics with the view to improving education systems, addressing rural teacher workforce issues, informing the preparation of pre-service teachers, and, most importantly, ensuring that rural students have access to educational opportunities that are engaging and meet their needs. It focuses specifically on researcher positionality on the insider-outsider continuum and how this informs ethical research in diverse rural communities, particularly those in which visible new migrants reside. Peer-reviewed journal articles that discuss how education researchers negotiate working in rural space are examined and considered in relation to discourse about ethics in practice and the insider/outsider continuum. Scholarship reflected in the literature spanned the fields of rural/research ethics, inclusive education, education research methodology and research with new migrants, minority and marginalised groups.

Progress in animal experimentation ethics. A case study from a brazilian medical school and from the international medical literature

PURPOSE: This study describes in Brazil and in the global biomedical community the time course of the development of animal research welfare guidelines. METHODS: The database of the Ethics Committee of the Faculty of Medicine of Ribeirao Preto (EC/FMRP-USP), Brazil, was surveyed since its inception in 2002 as the regulations became more stringent to provide better protection of animal research welfare at this institution. Medline database was evaluated to identify the number of publications in the period between 1968 and 2008 that used research animals and were in compliance with established ethics guidelines. RESULTS: The EC/FMRP-USP evaluated 979 projects up until 2009. Most of the applications came from Department of Physiology and the most frequently requested species was the rat. In 2004, national research funding agencies started to request prior approval from institutional review ethics committees prior to application review and this requirement became federal law in Brazil in 2008. The analysis of international publications revealed a relative reduction in studies involving research animals (18% in 1968 to 7.5% in 2008). CONCLUSIONS: The present work showed that in the last four decades major changes occurred in the guidelines dictating use of research animals occurred and they are being adopted by developing countries. Moreover, animal welfare concern in the scientific community preceded the introduction of journal guidelines for this purpose. Furthermore, in Brazil it was anticipated that laws were needed to protect animal research welfare from being not upheld.

Progress in animal experimentation ethics: a case study from a Brazilian medical school and from the international medical literature

PURPOSE: This study describes in Brazil and in the global biomedical community the time course of the development of animal research welfare guidelines. METHODS: The database of the Ethics Committee of the Faculty of Medicine of Ribeirao Preto (EC/FMRP-USP), Brazil, was surveyed since its inception in 2002 as the regulations became more stringent to provide better protection of animal research welfare at this institution. Medline database was evaluated to identify the number of publications in the period between 1968 and 2008 that used research animals and were in compliance with established ethics guidelines. RESULTS: The EC/FMRP-USP evaluated 979 projects up until 2009. Most of the applications came from Department of Physiology and the most frequently requested species was the rat. In 2004, national research funding agencies started to request prior approval from institutional review ethics committees prior to application review and this requirement became federal law in Brazil in 2008. The analysis of international publications revealed a relative reduction in studies involving research animals (18% in 1968 to 7.5% in 2008). CONCLUSIONS: The present work showed that in the last four decades major changes occurred in the guidelines dictating use of research animals occurred and they are being adopted by developing countries. Moreover, animal welfare concern in the scientific community preceded the introduction of journal guidelines for this purpose. Furthermore, in Brazil it was anticipated that laws were needed to protect animal research welfare from being not upheld.

Clinical ethics revisited

A decade ago, we reviewed the field of clinical ethics; assessed its progress in research, education, and ethics committees and consultation; and made predictions about the future of the field. In this article, we revisit clinical ethics to examine our earlier observations, highlight key developments, and discuss remaining challenges for clinical ethics, including the need to develop a global perspective on clinical ethics problems.

Informed consent in clinical research: do patients understand what they have signed?

Informed consent is an essential element of research, and signing this document is required to conduct most clinical trials. Its aim is to inform patients what their participation in the study will involve. However, increasingly, their complexity and length are making them difficult to understand, which might lead patients to give their authorization without having read them previously or without having understood what is stated. In this sense, the Ethics Committees for Clinical Research, and Pharmacists specialized in Hospital Pharmacy and Primary Care in their capacity as members of said committees, play an important and difficult role in defending the rights of patients. These Committees will review thoroughly these documents to guarantee that all legal requirements have been met and, at the same time, that they are easy to understand by the potential participants in a clinical trial.

Long-term outcomes of seriously injured children : a study using the Child Health Questionnaire

Objective: To assess the health-related quality of life (HRQoL) in children 1-2 years after they had sustained an injury. Methods: Parents of all children who were identified by the Queensland Trauma Registry during their admission to either of the two paediatric specialty hospitals in Brisbane, Australia, for the treatment of an injury, were invited to participate in this study. Parents who consented to participation received a copy of the Child Health Questionnaire (CHQ) that required them to provide information regarding their child’s HRQoL following injury. The CHQ scores for the study respondents were compared with those of the Australian norms. This study was approved by the relevant ethics committees. Results: Two hundred and forty-one completed questionnaires were returned. The majority of cases were male (65%) and there was even representation across all age groups. The majority of injuries were considered to be minor (81%) and were predominantly the result of falls and cycling accidents causing mainly fractures and intracranial injury. On the majority of subscales of the CHQ, study participants recorded scores that were statistically significantly below those of the Australian norms. None of the relevant variables collected by the Queensland Trauma Registry were found to predict scores on the CHQ in this study (for those children hospitalized for >24 h). Conclusion: Injured children are worse off than their Australian counterparts in terms of HRQoL even up to 2 years following an injury. Further research needs to be undertaken to identify factors that predict lower HRQoL in order to reduce the burden of injury on children and their families.

The provision of patient personal hygiene in the intensive care unit : a descriptive exploratory study of bed-bathing practice

Background/objectives The provision of the patient bed-bath is a fundamental nursing care activity yet few quantitative data and no qualitative data are available on registered nurses’ (RNs) clinical practice in this domain in the intensive care unit (ICU). The aim of this study was to describe ICU RNs current practice with respect to the timing, frequency and duration of the patient bed-bath and the cleansing and emollient agents used. Methods The study utilised a two-phase sequential explanatory mixed method design. Phase one used a questionnaire to survey RNs and phase two employed semi-structured focus group (FG) interviews with RNs. Data was collected over 28 days across four Australian metropolitan ICUs. Ethical approval was granted from the relevant hospital and university human research ethics committees. RNs were asked to complete a questionnaire following each episode of care (i.e. bed-bath) and then to attend one of three FG interviews: RNs with less than 2 years ICU experience; RNs with 2–5 years ICU experience; and RNs with greater than 5 years ICU experience. Results During the 28-day study period the four ICUs had 77.25 beds open. In phase one a total of 539 questionnaires were returned, representing 30.5% of episodes of patient bed-baths (based on 1767 bed occupancy and one bed-bath per patient per day). In 349 bed-bath episodes 54.7% patients were mechanically ventilated. The bed-bath was given between 02.00 and 06.00 h in 161 episodes (30%), took 15–30 min to complete (n = 195, 36.2%) and was completed within the last 8 h in 304 episodes (56.8%). Cleansing agents used were predominantly pH balanced soap or liquid soap and water (n = 379, 71%) in comparison to chlorhexidine impregnated sponges/cloths (n = 86, 16.1%) or other agents such as pre-packaged washcloths (n = 65, 12.2%). In 347 episodes (64.4%) emollients were not applied after the bed-bath. In phase two 12 FGs were conducted (three FGs at each ICU) with a total of 42 RN participants. Thematic analysis of FG transcripts across the three levels of RN ICU experience highlighted a transition of patient hygiene practice philosophy from shades of grey – falling in line for inexperienced clinicians to experienced clinicians concrete beliefs about patient bed-bath needs. Conclusions This study identified variation in process and products used in patient hygiene practices in four ICUs. Further study to improve patient outcomes is required to determine the appropriate timing of patient hygiene activities and cleansing agents used to improve skin integrity.

Knowledge and attitudes of paediatric nurses related to breastfeeding

Introduction: Almost 90% of Australian mothers are exclusively breastfeeding when they discharge from maternity hospitals but by six months of age breastfeeding infants have reduced to 32% nationally and 19% in Queensland, far below the national target of 80%. Many factors influence the choice to breastfeed, including health care provision, therefore the knowledge and attitudes of paediatric nurses have the potential to affect breastfeeding duration. Aims: To assess current breastfeeding knowledge and attitudes of paediatric nurses in metropolitan and regional Queensland settings. Method: The study used a cross-sectional survey design. The tool was developed from several documented health professional questionnaires about breastfeeding, with permission from authors. Survey items relating breastfeeding physiology, factors relating to breastfeeding success, and local, national and international policies were also included. Ethics approval was granted from the appropriate Ethics Committees to conduct the survey through tertiary metropolitan and regional hospital settings. Results: A total of 241 surveys were returned, achieving a response rate of 53%. Nurses acknowledged breastmilk as the best source of nutrition for infants (99%, n=238) and that mothers should be encouraged to breastfeed (92%, n=221). However, many respondents considered infant formula a nutritional equivalent (44%, n=105) and (47%, n=113) were unaware that supplemental formulas interfered with successful breastfeeding. Most nurses recognised that stress (e.g. infant hospitalisation) impacts on the success of breastfeeding (90%, n=216). Knowledge of breastfeeding anatomy and physiology was poor and a substantial number of nurses did not identify correct attachment in response to two diagrammatic representations (76%, n=183 and 45%, n=109). Survey results demonstrated deficiencies in knowledge that would impact on support provided to breastfeeding mothers. Knowledge deficits were also identified relating to local, national and international policies and protocols concerning breastfeeding and breastmilk substitutes. Conclusion: Breastfeeding knowledge and attitudes were exceptional in areas related to general breastfeeding knowledge. However, in areas directly related to nursing practice, considerable deficits in paediatric nurses' knowledge and attitudes were identified. Lack of appropriate skills, knowledge and varying attitudes amongst paediatric nurses has the potential to negatively impact on the education, advice and support provided to breastfeeding mothers and their families whilst their infant is in hospital. These study findings will guide future research and strategies to improve knowledge and policy statements to assist paediatric nurses in fulfilling their role.

A stepped-wedge cluster randomised controlled trial for evaluating rates of falls among inpatients in aged care rehabilitation units receiving tailored multimedia education in addition to usual care : a trial protocol

Introduction Falls are the most frequent adverse event reported in hospitals. Approximately 30% of in-hospital falls lead to an injury and up to 2% result in a fracture. A large randomised trial found that a trained health professional providing individualised falls prevention education to older inpatients reduced falls in a cognitively intact subgroup. This study aims to investigate whether this efficacious intervention can reduce falls and be clinically useful and cost-effective when delivered in the real-life clinical environment. Methods A stepped-wedge cluster randomised trial will be used across eight subacute units (clusters) which will be randomised to one of four dates to start the intervention. Usual care on these units includes patient's screening, assessment and implementation of individualised falls prevention strategies, ongoing staff training and environmental strategies. Patients with better levels of cognition (Mini-Mental State Examination >23/30) will receive the individualised education from a trained health professional in addition to usual care while patient's feedback received during education sessions will be provided to unit staff. Unit staff will receive training to assist in intervention delivery and to enhance uptake of strategies by patients. Falls data will be collected by two methods: case note audit by research assistants and the hospital falls reporting system. Cluster-level data including patient's admissions, length of stay and diagnosis will be collected from hospital systems. Data will be analysed allowing for correlation of outcomes (clustering) within units. An economic analysis will be undertaken which includes an incremental cost-effectiveness analysis. Ethics and dissemination The study was approved by The University of Notre Dame Australia Human Research Ethics Committee and local hospital ethics committees. Results The results will be disseminated through local site networks, and future funding and delivery of falls prevention programmes within WA Health will be informed. Results will also be disseminated through peer-reviewed publications and medical conferences.

Doctoral research training : encouraging timely completion – case study reflections of one university on how it supports a vibrant research training culture

This is a case study of a young university striving to generate and sustain a vibrant Research Training culture. The university’s research training framework is informed by a belief in a project management approach to achieving successful research candidature. This has led to the definition and reporting of key milestones during candidature. In turn, these milestones have generated a range of training programs to support Higher Degree Research (HDR) students to meet these milestones in a timely fashion. Each milestone focuses on a specific set of skills blended with supporting the development of different parts of the doctoral thesis. Data on student progress and completion has provided evidence in highlighting the role that the milestones and training are playing in supporting timely completion. A university-wide reporting cycle generated data on the range of workshops and training provided to Higher Degree Research students and supervisors. The report provided details of thesis topic and format, as well as participation in research training events and participant evaluation of those events. Analysis of the data led to recommendations and comments on the strengths and weaknesses of the current research training program. Discussion considered strategies and drivers for enhancements into the future. In particular, the paper reflects on the significant potential role of centrally curated knowledge systems to support HDR student and supervisor access, and engagement and success. The research training program was developed using blended learning as a model. It covered face-to-face workshops as well as online modules. These were supplemented by web portals that offered a range of services to inform and educate students and supervisors and included opportunities for students to interact with each other. Topics ranged from the research life cycle, writing and publication, ethics, managing research data, managing copyright, and project management to use of software and the University’s Code of Conduct for Research. The challenges discussed included: How to reach off campus students and those studying in external modes? How best to promote events to potential participants? How long and what format is best for face-to-face sessions? What online resources best supplement face-to-face offerings? Is there a place for peer-based learning and what form should this take? These questions are raised by a relatively young university seeking to build and sustain a vibrant research culture. The rapid growth in enrolments in recent years has challenged previous one-to-one models of support. This review of research training is timely in seeking strategies to address changing research training support capacity and student needs. Part of the discussion will focus on supervisory training, noting that good supervision is the one remaining place where one-to-one support is provided. Ensuring that supervisors are appropriately equipped to address student expectations is considered in the context of the research training provisions. The paper concludes with reflection on the challenges faced, and recommended ways forward as the number of research students grows into the future.

Studying refugee settlement through longitudinal research : methodological and ethical insights from the Good Starts study

Research involving resettled refugees raises methodological and ethical complexities. These complexities typically emerge within cross-sectional research that focuses on refugee experiences at a specific point in time. Given the long term and dynamic nature of refugee settlement, longitudinal research is valuable, yet it raises distinct complexities within the research process. This article focuses on the methodological and ethical insights that emerged in a longitudinal study of settlement and wellbeing with a cohort of young people from refugee backgrounds in Australia. It considers: engagement and retention of a cohort over time; the need to adapt research tools to changing settlement contexts and life stages; participants’ experiences of long-term involvement in the study; and the challenge of timely translation of findings into evidence for policy and practice. The article contributes to a growing understanding of the practical, ethical and epistemological challenges and opportunities presented by longitudinal research, in this case, with resettled refugee background youth.

FluMum : a prospective cohort study of mother-infant pairs assessing the effectiveness of maternal influenza vaccination in prevention of influenza in early infancy

INTRODUCTION Influenza vaccination in pregnancy is recommended for all women in Australia, particularly those who will be in their second or third trimester during the influenza season. However, there has been no systematic monitoring of influenza vaccine uptake among pregnant women in Australia. Evidence is emerging of benefit to the infant with respect to preventing influenza infection in the first 6 months of life. The FluMum study aims to systematically monitor influenza vaccine uptake during pregnancy in Australia and determine the effectiveness of maternal vaccination in preventing laboratory-confirmed influenza in their offspring up to 6 months of age. METHODS AND ANALYSIS A prospective cohort study of 10 106 mother-infant pairs recruited between 38 weeks gestation and 55 days postdelivery in six Australian capital cities. Detailed maternal and infant information is collected at enrolment, including influenza illness and vaccination history with a follow-up data collection time point at infant age 6 months. The primary outcome is laboratory-confirmed influenza in the infant. Case ascertainment occurs through searches of Australian notifiable diseases data sets once the infant turns 6 months of age (with parental consent). The primary analysis involves calculating vaccine effectiveness against laboratory-confirmed influenza by comparing the incidence of influenza in infants of vaccinated mothers to the incidence in infants of unvaccinated mothers. Secondary analyses include annual and pooled estimates of the proportion of mothers vaccinated during pregnancy, the effectiveness of maternal vaccination in preventing hospitalisation for acute respiratory illness and modelling to assess the determinants of vaccination. ETHICS AND DISSEMINATION The study was approved by all institutional Human Research Ethics Committees responsible for participating sites. Study findings will be published in peer review journals and presented at national and international conferences. TRIAL REGISTRATION NUMBER The study is registered with the Australia and New Zealand Clinical Trials Registry (ANZCTR) number: 12612000175875.