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.

Low-dimensional hydrogen-bonded structures in the 1:1 and 1:2 proton-transfer compounds of 4,5-dichlorophthalic acid with the aliphatic Lewis bases triethylamine, diethylamine, n-butylamine and piperidine

The structures of proton-transfer compounds of 4,5-dichlorophthalic acid (DCPA) with the aliphatic Lewis bases triethylamine, diethylamine, n-butylamine and piperidine, namely triethylaminium 2-carboxy-4,5-dichlorobenzoate C~6~H~16~N^+^ C~8~H~3~Cl~2~O~4~^-^ (I), diethylaminium 2-carboxy-4,5-dichlorobenzoate C~4~H~12~N^+^ C~8~H~3~Cl~2~O~4~^-^ (II), bis(n-butylaminium) 4,5-dichlorophthalate monohydrate 2(C~4~H~12~N^+^) C~8~H~2~Cl~2~O~4~^2-^ . H~2~O (III) and bis(piperidinium) 4,5-dichlorophthalate monohydrate 2(C~5~H~12~N^+^) C~8~H~2~Cl~2~O~4~^2-^ . H~2~O (IV)have been determined at 200 K. All compounds have hydrogen-bonding associations giving in (I) discrete cation-anion units, linear chains in (II) while (III) and (IV) both have two-dimensional structures. In (I) a discrete cation-anion unit is formed through an asymmetric R2/1(4) N+-H...O,O' hydrogen-bonding association whereas in (II), one-dimensional chains are formed through linear N-H...O associations by both aminium H donors. In compounds (III) and (IV) the primary N-H...O linked cation-anion units are extended into a two-dimensional sheet structure via amide N-H...O(carboxyl) and ...O(carbonyl) interactions. In the 1:1 salts [(I) and (II)], the hydrogen 4,5-dichlorophthalate anions are essentially planar with short intramolecular carboxylic acid O-H...O(carboxyl) hydrogen bonds [O...O, 2.4223(14) and 2.388(2)A respectively]. This work provides a further example of the uncommon zero-dimensional hydrogen-bonded DCPA-Lewis base salt and the one-dimensional chain structure type, while even with the hydrate structures of the 1:2 salts with the primary and secondary amines, the low dimensionality generally associated with 1:1 DCPA salts is also found.

GPS fault detection with IMU and aircraft dynamics

Approaches with Vertical Guidance (APV) can provide greater safety and cost savings to general aviation through accurate GPS horizontal and vertical navigation. However, GPS needs augmentation to achieve APV fault detection requirements. Aircraft Based Augmentation Systems (ABAS) fuse GPS with additional sensors at the aircraft. Typical ABAS designs assume high-quality inertial sensors with Kalman filters but these are too expensive for general aviation. Instead of using high-quality (and expensive) sensors, the purpose of this paper is to investigate augmenting GPS with a low-quality MEMS IMU and Aircraft Dynamic Model (ADM). The IMU and ADM are fused together using a multiple model fusion strategy in a bank of Extended Kalman Filters (EKF) with the Normalized Solution Separation (NSS) fault detection scheme. A tightly-coupled configuration with GPS is used and frequent GPS updates are applied to the IMU and ADM to compensate for their errors. Based upon a simulated APV approach, the performance of this architecture in detecting a GPS ramp fault is investigated showing a performance improvement over a GPS-only “snapshot” implementation of the NSS method. The effect of fusing the IMU with the ADM is evaluated by comparing a GPS-IMU-ADM EKF with a GPS-IMU EKF where a small improvement in protection levels is shown.

Space-frequency block code with matched rotation for MIMO-OFDM system with limited feedback

This paper presents a novel matched rotation precoding (MRP) scheme to design a rate one space-frequency block code (SFBC) and a multirate SFBC for MIMO-OFDM systems with limited feedback. The proposed rate one MRP and multirate MRP can always achieve full transmit diversity and optimal system performance for arbitrary number of antennas, subcarrier intervals, and subcarrier groupings, with limited channel knowledge required by the transmit antennas. The optimization process of the rate one MRP is simple and easily visualized so that the optimal rotation angle can be derived explicitly, or even intuitively for some cases. The multirate MRP has a complex optimization process, but it has a better spectral efficiency and provides a relatively smooth balance between system performance and transmission rate. Simulations show that the proposed SFBC with MRP can overcome the diversity loss for specific propagation scenarios, always improve the system performance, and demonstrate flexible performance with large performance gain. Therefore the proposed SFBCs with MRP demonstrate flexibility and feasibility so that it is more suitable for a practical MIMO-OFDM system with dynamic parameters.

A preliminary investigation of the role of the Phenylalynine: Tyrosine Ratio in children with early and continuously treated phenylketonuria : toward identification of “safe” levels

Children with early and continuously treated phenylketonuria (ECT-PKU) remain at risk of developing executive function (EF) deficits. There is some evidence that a high phenylalanine to tyrosine ratio (phe:tyr) is more strongly associated with impaired EF development than high phenylalanine alone. This study examined EF in a sample of 11 adolescents against concurrent and historical levels of phenylalanine, phe:tyr, and tyrosine. Lifetime measures of phe:tyr were more strongly associated with EF than phenylalanine-only measures. Children with a lifetime phe:tyr less than 6 demonstrated normal EF, whereas children who had a lifetime phe:tyr above 6, on average, demonstrated clinically impaired EF.

Teachers’ attitudes toward reporting child sexual abuse : problems with existing research leading to new scale development

This paper details a systematic literature review identifying problems in extant research relating to teachers’ attitudes towards reporting child sexual abuse, and offers a model for new attitude scale development and testing. Scale development comprised a five-phase process grounded in contemporary attitude theories including: a) developing the initial item pool; b) conducting a panel review; c) refining the scale via an expert focus group; d) building content validity through cognitive interviews; e) assessing internal consistency via field testing. The resulting 21-item scale displayed construct validity in preliminary testing. The scale may prove useful as a research tool, given the theoretical supposition that attitudes may be changed with time, context, experience, and education. Further investigation with a larger sample is warranted.

Anxiety among high school students in India : comparisons across gender, school type, social strata, and perceptions of quality time with parents

The broad objective of the study was to better understand anxiety among adolescents in Kolkata city, India. Specifically, the study compared anxiety across gender, school type, socio-economic background and mothers’ employment status. The study also examined adolescents’ perceptions of quality time with their parents. A group of 460 adolescents (220 boys and 240 girls), aged 13-17 years were recruited to participate in the study via a multi-stage sampling technique. The data were collected using a self-report semi-structured questionnaire and a standardized psychological test, the State-Trait Anxiety Inventory. Results show that anxiety was prevalent in the sample with 20.1% of boys and 17.9% of girls found to be suffering from high anxiety. More boys were anxious than girls (p<0.01). Adolescents from Bengali medium schools were more anxious than adolescents from English medium schools (p<0.01). Adolescents belonging to the middle class (middle socio-economic group) suffered more anxiety than those from both high and low socio-economic groups (p<0.01). Adolescents with working mothers were found to be more anxious (p<0.01). Results also show that a substantial proportion of the adolescents perceived they did not receive quality time from fathers (32.1%) and mothers (21.3%). A large number of them also did not feel comfortable to share their personal issues with their parents (60.0% for fathers and 40.0% for mothers).

From China with love

Like the Montagues and the Capulets, the East and West have had a great many affairs that have stirred suspicions of one another. But for those of us fortunate enough to cross the cultural divide, Gillian Lawson says there is much about which to be curious, excited and anxious.

In Bed with Autobiography: Unravelling the Fabric of Gender and Genre in Women’s Bed(room) Confessions

This thesis consists of a confessional narrative, What My Mother Doesn’t Know, and an accompanying exegesis, And Why I Should (Maybe) Tell Her. The creative piece employs the confessional mode as a subversive device in three separate narratives, each of which situates the bed as a site of resistance. The exegesis investigates how this self-disclosure in a domestic space flouts the governing rules of self-representation, specifically: telling the truth, respecting privacy and displaying normalcy. The female confession, I argue, creates an alternative space in women’s autobiography where notions of truth-telling can be undermined, the political dimensions of personal experience can be uncovered and the discourse of normality can be negotiated. In particular, women’s confessions told in, on or about the bed, dismantle the genre’s illusion of self and confirm the representative aspects of women’s experience. Framed within these parameters of power and powerlessness, the exegesis includes textual analyses of Charlotte Perkins Gilman’s The Yellow Wallpaper (1892), Tracey Emin’s My Bed (1999) and Lauren Slater’s Lying (2000), each of which exposes in a bedroom space, the author’s most obscure, intimate and traumatic experiences. Situated firmly within and against the genre’s traditional masculine domain, the exegesis also includes mediations on the creative work that validate the bed as my fabric for confession.

Australia experiments with 'experimental use' exemption

Lawmakers are asking whether Australian researchers need an express 'experimental use' defense against patent infringement. The overriding policy for establishing a patent system is indisputably the promotion of innovation. According to traditional intellectual property pedagogy, the incentive to innovate flows from the reward afforded to the inventor. A balancing policy is that the patentee must fully disclose the invention to help minimize the risks of duplication and provides a basis for improvements by further research.Where there is uncertainty as to how these competing policy limbs are balanced and whether a patentee can exclude others from experimenting on a patented invention, the uncertain legal environment disadvantages both the patentee and researcher. Different jurisdictions have treated the experimental use question quite differently with varied results for the researcher. The biotechnology industry is evolving at an unprecedented pace and the law will as is always the case, lag behind in its usual cautious fashion. The Australian law may finally catch up to researchers' concerns.

ICTs for creative practice in drama : creating cyberdrama with young people in school contexts

This study explores young people's creative practice through using Information and Communications Technologies (ICTs) - in one particular learning area - Drama. The study focuses on school-based contexts and the impact of ICT-based interventions within two drama education case studies. The first pilot study involved the use of online spaces to complement a co-curricula performance project. The second focus case was a curriculum-based project with online spaces and digital technologies being used to create a cyberdrama. Each case documents the activity systems, participant experiences and meaning making in specific institutional and technological contexts. The nature of creative practice and learning are analysed, using frameworks drawn from Vygotsky's socio-historical theory (including his work on creativity) and from activity theory. Case study analysis revealed the nature of contradictions encountered and these required an analysis of institutional constraints and the dynamics of power. Cyberdrama offers young people opportunities to explore drama through new modes and the use of ICTs can be seen as contributing different tools, spaces and communities for creative activity. To be able to engage in creative practice using ICTs requires a focus on a range of cultural tools and social practices beyond those of the purely technological. Cybernetic creative practice requires flexibility in the negotiation of tool use and subjects and a system that responds to feedback and can adapt. Classroom-based dramatic practice may allow for the negotiation of power and tool use in the development of collaborative works of the imagination. However, creative practice using ICTs in schools is typically restricted by authoritative power structures and access issues. The research identified participant engagement and meaning making emerging from different factors, with some students showing preferences for embodied creative practice in Drama that did not involve ICTs. The findings of the study suggest ICT-based interventions need to focus on different applications for the technology but also on embodied experience, the negotiation of power, identity and human interactions.

Enhancing the experience of public transport users with urban screens and mobile applications

Public transportation is an environment with great potential for applying location-based services through mobile devices. This paper provides the underpinning rationale for research that will be looking at how the real-time passenger information system deployed by the Translink Transit Authority across all of South East Queensland in Australia can provide a core platform to improve commuters’ user experiences. This system relies on mobile computing and GPS technology to provide accurate information on transport vehicle locations. The proposal builds on this platform to inform the design and development of innovative social media, mobile computing and geospatial information applications. The core aim is to digitally augment the public transport environment to enhance the user experience of commuters for a more enjoyable journey.

In vitro cultivation of adult human chondrocytes : importance of culture system, oxygen and zonal differences

Articular cartilage exhibits limited intrinsic regenerative capacity and focal tissue defects can lead to the development of osteoarthritis (OA), a painful and debilitating loss of cartilage tissue. In Australia, 1.4 million people are affected by OA and its prevalence is increasing in line with current demographics. As treatment options are limited, new therapeutic approaches are being investigated including biological resurfacing of joints with tissue-engineered cartilage. Despite some progress in the field, major challenges remain to be addressed for large scale clinical success. For example, large numbers of chondrogenic cells are required for cartilage formation, but chondrocytes lose their chondrogenic phenotype (dedifferentiate) during in vitro propagation. Additionally, the zonal organization of articular cartilage is critical for normal cartilage function, but development of zonal structure has been largely neglected in cartilage repair strategies. Therefore, we hypothesised that culture conditions for freshly isolated human articular chondrocytes from non-OA and OA sources can be improved by employing microcarrier cultures and a reduced oxygen environment and that oxygen is a critical factor in the maintenance of the zonal chondrocyte phenotype. Microcarriers have successfully been used to cultivate bovine chondrocytes, and offer a potential alternative for clinical expansion of human chondrocytes. We hypothesised that improved yields can be achieved by propagating human chondrocytes on microcarriers. We found that cells on microcarriers acquired a flattened, polygonal morphology and initially proliferated faster than monolayercultivated cells. However, microcarrier cultivation over four weeks did not improve growth rates or the chondrogenic potential of non-OA and OA human articular chondrocytes over conventional monolayer cultivation. Based on these observations, we aimed to optimise culture conditions by modifying oxygen tension, to more closely reflect the in vivo environment. We found that propagation at 5% oxygen tension (moderate hypoxia) did not improve proliferation or redifferentiation capacity of human osteoarthritic chondrocytes. Moderate hypoxia increased the expression of chondrogenic markers during redifferentiation. However, osteoarthritic chondrocytes cultivated on microcarriers exhibited lower expression levels of chondrogenic surface marker proteins and had at best equivalent redifferentiation capacities compared to monolayer-cultured cells. This suggests that monolayer culture with multiple passaging potentially selects for a subpopulation of cells with higher differentiation capacity, which are otherwise rare in osteoarthritic, aged cartilage. However, fibroblastic proteins were found to be highly expressed in all cultures of human osteoarthritic chondrocytes indicating the presence of a high proportion of dedifferentiated, senescent cells with a chondrocytic phenotype that was not rescued by moderate hypoxia. The different zones of cartilage support chondrocyte subpopulations, which exhibit characteristic protein expression and experience varying oxygen tensions. We, therefore, hypothesised that oxygen tension affects the zonal marker expression of human articular chondrocytes isolated from the different cartilage layers. We found that zonal chondrocytes maintained these phenotypic differences during in vitro cultivation. Low oxygen environments favoured the expression of the zonal marker proteoglycan 4 in superficial cells, most likely through the promotion of chondrogenesis. The putative zonal markers clusterin and cartilage intermediate layer protein were found to be expressed by all subpopulations of human osteoarthritic chondrocytes ex vivo and, thus, may not be reliable predictors of in vitro stratification using these clinically relevant cells. The findings in this thesis underline the importance of considering low oxygen conditions and zonal stratification when creating native-like cartilaginous constructs. We have not yet found the right cues to successfully cultivate clinically-relevant human osteoarthritic chondrocytes in vitro. A more thorough understanding of chondrocyte biology and the processes of chondrogenesis are required to ensure the clinical success of cartilage tissue engineering.