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.

Towards a culturally appropriate mental health system: Sudanese-Australians' experiences with trauma

Australia is fortunate to welcome approximately 13,000 humanitarian entrants per year, most of whom have experienced protracted violence, hardship and life in refugee camps. The majority of humanitarian migrants were raised in cultural contexts very different to that of Australia, contributing to the increasing diversity of this region. With this diversity comes a responsibility to ensure every Australian receives culturally appropriate mental healthcare. Those who are forced into migration have experienced trauma and the stress of acculturation often compounds this trauma. This study investigated the experience of trauma from the perspectives of Sudanese-Australians. Grounded theory methodology was employed to extract themes from interviews with 15 Sudanese-Australians aged between 19 and 49 years. Results demonstrated four overarching themes: support, religion, strength and new possibilities. The data within these themes are compared and contrasted with previous literature that has examined notions of trauma, distress and growth in western populations. Conclusions drawn from these results highlight the need to build inclusive practices that support diversity into existing trauma services in Australia.

Design and deployment of a remote robust sensor network : experiences from an outdoor water quality monitoring network

This paper investigates a wireless sensor network deployment - monitoring water quality, e.g. salinity and the level of the underground water table - in a remote tropical area of northern Australia. Our goal is to collect real time water quality measurements together with the amount of water being pumped out in the area, and investigate the impacts of current irrigation practice on the environments, in particular underground water salination. This is a challenging task featuring wide geographic area coverage (mean transmission range between nodes is more than 800 meters), highly variable radio propagations, high end-to-end packet delivery rate requirements, and hostile deployment environments. We have designed, implemented and deployed a sensor network system, which has been collecting water quality and flow measurements, e.g., water flow rate and water flow ticks for over one month. The preliminary results show that sensor networks are a promising solution to deploying a sustainable irrigation system, e.g., maximizing the amount of water pumped out from an area with minimum impact on water quality.

Mentoring experiences as professional development for leaders in environmental education : the cascade of influence

Environmental education is a field which has only come of age since the late nineteen sixties. While its content and practice have been widely debated and researched, its leadership has been minimally studied and, therefore, is only partially understood. The role of mentoring in the development of leaders has been alluded to, but has attracted scant research. Therefore, this study explores the importance of mentoring during the personal and professional development of leaders in environmental education. Four major research questions were investigated. Firstly, have leaders been men to red during their involvement with environmental education? Secondly, when and how has that mentoring taken place? Thirdly, what was the personal and professional effectiveness of the mentoring relationship? Fourthly, is there any continuation of the mentoring process which might be appropriate for professional development within the field of environmental education? Leaders were solicited from a broad field of environmental educators including teachers, administrators, academics, natural resource personnel, business and community persons. They had to be recognized as active leaders across several environmental education networks. The research elicited qualitative and quantitative survey data from fifty seven persons in Queensland, Australia and Colorado, USA. Seventeen semi-structured interviews were subsequently conducted with selected leaders who had nominated their mentors. This led to a further thirteen 'linked interviews' with some of the mentors' mentors and new mentorees. The interview data is presented as four cases reflecting pairs, triads, chains and webs of relationships- a major finding of the research process. The analysis of the data from the interviews and the surveys was conducted according to a grounded theory approach and was facilitated by NUD.IST, a computer program for non-numerical text analysis. The findings of the study revealed many variations on the classical mentoring patterns found in the literature. Gender and age were not seen as mportant factors, as there were examples of contemporaries in age, older men to younger women, older women to younger men, and women to women. Personal compatibility, professional respect and philosophical congruence were critical. Mentoring was initiated from early, mid and late career stages with the average length of the relationship being fourteen years. There was seldom an example of the mentoree using the mentor for hierarchical career climbing, although frequent career changes were made. However, leadership actions were found to increase after the intervention of a mentoring relationship. Three major categories of informal mentoring were revealed - perceived,acknowledged and deliberate. Further analysis led to the evolution of the core concept, a 'cascade of influence'. The major finding of this study was that this sample of leaders, mentors and new mentorees moved from the perception of having been mentored to the acknowledgment of these relationships and an affirmation of their efficacy for both personal and professional growth. Hence, the participants were more likely to continue future mentoring, not as a serendipitous happening, but through a deliberate choice. Heightened awareness and more frequent 'cascading' of mentoring have positive implications for the professional development of future leaders in environmental education in both formal and informal settings. Effective mentoring in environmental education does not seek to create 'clones' of the mentors, but rather to foster the development of autonomous mentorees who share a philosophical grounding. It is a deliberate invitation to 'join the clan'.

The development of science concepts emergent from science museum and post-visit activity experiences : students' construction of knowledge

This research investigated students' construction of knowledge about the topics of magnetism and electricity emergent from a visit to an interactive science centre and subsequent classroom-based activities linked to the science centre exhibits. The significance of this study is that it analyses critically an aspect of school visits to informal learning centres that has been neglected by researchers in the past, namely the influence of post-visit activities in the classroom on subsequent learning and knowledge construction. Employing an interpretive methodology, the study focused on three areas of endeavour. Firstly, the establishment of a set of principles for the development of post-visit activities, from a constructivist framework, to facilitate students' learning of science. Secondly, to describe and interpret students' scientific understandings : prior t o a visit t o a science museum; following a visit t o a science museum; and following post-visit activities that were related to their museum experiences. Finally, to describe and interpret the ways in which students constructed their understandings: prior to a visit to a science museum; following a visit to a science museum; and following post-visit activities directly related to their museum experiences. The study was designed and implemented in three stages: 1) identification and establishment of the principles for design and evaluation of post-visit activities; 2) a pilot study of specific post-visit activities and data gathering strategies related to student construction of knowledge; and 3) interpretation of students' construction of knowledge from a visit to a science museum and subsequent completion of post-visit activities, which constituted the main study. Twelve students were selected from a year 7 class to participate in the study. This study provides evidence that the series of post-visit activities, related to the museum experiences, resulted in students constructing and reconstructing their personal knowledge of science concepts and principles represented in the science museum exhibits, sometimes towards the accepted scientific understanding and sometimes in different and surprising ways. Findings demonstrate the interrelationships between learning that occurs at school, at home and in informal learning settings. The study also underscores for teachers and staff of science museums and similar centres the importance of planning pre- and post-visit activities, not only to support the development of scientific conceptions, but also to detect and respond to alternative conceptions that may be produced or strengthened during a visit to an informal learning centre. Consistent with contemporary views of constructivism, the study strongly supports the views that : 1) knowledge is uniquely structured by the individual; 2) the processes of knowledge construction are gradual, incremental, and assimilative in nature; 3) changes in conceptual understanding are can be interpreted in the light of prior knowledge and understanding; and 4) knowledge and understanding develop idiosyncratically, progressing and sometimes appearing to regress when compared with contemporary science. This study has implications for teachers, students, museum educators, and the science education community given the lack of research into the processes of knowledge construction in informal contexts and the roles that post-visit activities play in the overall process of learning.

Geekdom for Grrrls health : Australian undergraduate experiences developing and promoting women’s health in cyberspace

There is an increasing global reliance on the Internet for retrieving information on health, illness, and recovery (Sillence et al, 2007; Laurent et al, 2009; Adams, 2010). People suffering from a vast array of illnesses, conditions, and complaints, as well as healthy travelers seeking advice about safe practices abroad, and teens seeking information about safe sexual practices are all now more likely to go to the internet for information than they are to rely solely on a general practitioner or physician (Santor et al, 2007; Moreno et al, 2009; Bartlett et al, 2010). Women in particular seek advice and support online for a number of health-related concerns regarding issues such as puberty, conception, pregnancy, postnatal depression, mothering, breast-cancer recovery, and ageing healthily (van Zutphen, 2008; Raymond et al, 2005). In keeping with this increasing socio-technological trend, the Women’s Health Unit at the Queensland University of Technology (Q.U.T), Brisbane, Australia, introduced the research, design, and development of online information resources for issues affecting the health of Australian women as an assessment item for students in the undergraduate Public Health curriculum. Students were required to research a particular health issue affecting Australian women, including pregnancy, pregnancy terminations, postnatal depression, returning to the work force after having a baby, breast cancer recovery, chronic disease prevention, health and safety for sex-workers, and ageing healthily. Students were required to design and develop websites that supported people living with these conditions, or who were in these situations. The websites were designed for communicating effectively with both women seeking information about their health, and their health practitioners. The pedagogical challenge inherent in this exercise was twofold: firstly, to encourage students to develop the skills to design and maintain software for online health forums; and secondly, to challenge public health students to go beyond generating ‘awareness’ and imparting health information to developing a nuanced understanding of the worlds and perspectives of their audiences, who require supportive networks and options that resonate with their restrictions, capabilities, and dispositions. This latter challenge spanned the realms of research, communication, and aesthetic design. This paper firstly, discusses an increasing reliance on the Internet by women seeking health-related information and the potential health risks and benefits of this trend. Secondly, it applies a post-structural analysis of the de-centred and mobile female self, as online social ‘spaces’ and networks supersede geographical ‘places’ and hierarchies, with implications for democracy, equality, power, and ultimately women’s health. Thirdly, it depicts the processes (learning reflections) and products (developed websites) created within this Women’s Health Unit by the students. Finally, we review this development in the undergraduate curriculum in terms of the importance of providing students with skills in research, communication, and technology in order to share and implement improved health care and social marketing for women as both recipients and providers of health care in the Internet Age.