People with ID as active participants in nursing research : a literature review.

Aim: The movement from a medical model of disability to a more social model implies an imperative to include the views of people with ID in research regarding their care. Contemporary quality processes in improving care require consumer involvement at many levels and in doing so have shown better outcomes. A New Zealand research study is being undertaken utilizing focus groups with people with ID to understand their experiences during a psychiatric inpatient admission. The primary focus of this presentation will concern the literature review, undertaken as part of the study, of research in which people with ID have participated. Method: The literature review was conducted using a variety of electronic databases and search terms to identify studies with people with ID as active participants. Results: Only a few studies have been undertaken with people with ID as participants. While these studies demonstrate numerous benefits in including the voice of the person with ID this still remains absent from much of the research discourse. Conclusion: It is accepted and indeed advocated that people with ID have the same rights as others in regard to choosing whether or not they wish to participate in research. High response rates in the few identified studies indicated that people with ID are eager to be consulted. It is recommended that the unique needs of people with ID be taken into account in the research evidence base for future services.

The Stitchery collective : more than pretty clothes for pretty people

As a cultural field, the world of fashion is usually associated with ‘exclusive’ qualities such as celebrity, glamour and the value of being young beautiful and size 10. By and large fashion design courses adhere to this model of fashion production and consumption training their graduates to compete successfully in an industry that seems far removed from the notions inclusivity and connection of community engagement. However, alternative models can and do exist. This presentation tells the story of ‘the stitchery collective’ a group of graduates from QUTs Creative Industries Fashion program who are developing an innovative model of fashion practice focussed around the ideas and values both of community engagement and community cultural development. Their work to date has included projects that target specific community groups – such as “Fashioning Social Inclusion” (2010-2011) that works with Brisbane women who belong to migrant and refugee communities, as well as more recently “WARM” a workshop delivered to children at the 3rd International Kids’ Carnival hosted by La Biennale in Venice (February 2012). A common thread across these programs is a desire to investigate the premise that clothing and dress can potentially act as a lingua franca that enables connection and communication; and that in fact aspects of ‘fashion’ culture can be mobilised in a community focussed context to enhance cultural exchange. The issue of how ‘learning’ happens in these contexts provides rich scope for analysis and discussion – given the innovative and engaged nature of the work our discussion will particularly highlight the ‘leaning through doing’ that occurs as well as the ‘collective’ nature of the design processes we develop and promote. The story will include the voices and perspectives of several of the stitchery collective’s members as well as community partners.

Comprehensive assessment of the fitness of older people for chemotherapy

Purpose: To present the results of a mixed-method study comparing the level of agreement of a two-phased, nurse-administered Comprehensive Geriatric Assessment (CGA) with current methods that assess the fitness for chemotherapy of older cancer patients. A nurse-led model of multidisciplinary cancer care based on the results is also described. Methods: The two phases comprised initial screening by a nurse with the Vulnerable Elders Survey-13 [VES-13], followed by nurse administration of a detailed CGA. Both phases were linked to a computerised algorithm categorising the patient as ‘fit’, ‘vulnerable’ or ‘frail’. The study determined the level of agreement between VES-13- and CGA-determined categories; and between the CGA and the physicians’ assessments. It also compared the CGA’s predictive abilities in terms of subsequent treatment toxicity; while interviews determined the acceptability of the nurse-led procedure from key stakeholders' perspectives. Results: Data collection was completed in December 2011. The results will be presented at the conference. A consecutive-series n=170 will be enrolled, 33% of whom are ‘fit’; 33% ‘vulnerable’; and 33% ‘too frail’ for treatment. This sample can detect, with 90% power, kappa coefficients of agreement of ≥ 0.70 or higher (“substantial agreement”). Fitness sub-group comparisons of agreement between the medical oncologist and the nurse assessments can detect kappa estimates of Κ ≥ 0.80 with the same power. Conclusion: The results have informed a nurse-led model of cancer care. It meets a clear need to develop, implement and test a nurse-led, robust, evidence-based, clinically-justifiable and economically-feasible CGA process that has relevance in national and international contexts.

Narrative, education policy and the newsprint media : A critical discourse analysis of the construction of young people's participation in education or employment

This thesis used Critical Discourse Analysis to investigate how a government policy and the newsprint media constructed discussion about young people’s participation in education or employment. The study found that a continuous narrative across both sites about government as a noble agent taking action to redress the social disruption caused by young people’s disengagement. Unlike the education policy, the newsprint media blamed young people who were disengaged and failed to recognise the barriers they often face. The study points to possibilities for utilising the power of narrative to build a more fair and rigorous discussion of issues in the public sphere.

Knowledge is not power, but it’s a start : what young people know about their rights and obligations in employment

Scholarship addressing the employment concerns of school age workers has identified a number of areas of vulnerability. Prominent among these is that young workers have insufficient knowledge of their rights in employment, yet the extent of this knowledge has not previously been quantified. This study explores areas of strength and deficit in awareness of employment rights and obligations in a sample of 892 young people in Australian high schools. The findings demonstrate that, despite part-time work being a majority experience for school students, young Australians know relatively little of their employment rights. The conclusions underscore the need for education strategies that inform young people prior to and in the very early stages of their working lives.

A longitudinal study of grieving in family caregivers of people with dementia

A longitudinal study of grieving in family caregivers of people with dementia Recent research into dementia has identified the long term impact that the role of care giving for a relative with dementia has on family members This is largely due to the cognitive decline that characterises dementia and the losses that can be directly attributed to this. These losses include loss of memories, relationships and intimacy, and are often ambiguous so that the grief that accompanies them is commonly not recognised or acknowledged. The role and impact of pre-death or anticipatory grief has not previously been widely considered as a factor influencing health and well-being of family caregivers. Studies of grief in caregivers of a relative with dementia have concluded that grief is one of the greatest barriers to care giving and is a primary determinant of caregiver well-being. The accumulation of losses, in conjunction with experiences unique to dementia care giving, place family caregivers at risk of complicated grief. This occurs when integration of the death does not take place following bereavement and has been associated with a range of negative health outcomes. The aim of this research was to determine the influence of grief, in addition to other factors representing both positive and negative aspects of the role, on the health related quality of life of family caregivers of people with dementia, prior to and following the death of their relative with dementia. An exploratory research project underpinned by a conceptual framework of caregivers’ adaptation in the context of subjective appraisal of the strains and gains in their role was undertaken. The research comprised three studies. Study 1 was a scoping study that involved a series of semi-structured interviews with thirteen participants who were family caregivers of people with severe dementia or whose relative with dementia had died in the previous twelve months. The results of this study in conjunction with factors identified in the literature informed data collection for the further studies. Study 2 was a cross sectional survey of fifty caregivers recruited when their relative was in the moderate to severe stage of dementia. This study provided the baseline data for Study 3, a prospective cohort follow up study. Study 3 consisted of seventeen participants followed up at two time points after the death of their relative with dementia: six weeks and then six months following the death of the relative with dementia. The scoping study indicated that differences in appraisal of the care giving role and encounters with health professionals were related to levels of grief of caregivers prior to and following the death of the relative with dementia. This was supported in the baseline and follow up studies. In the baseline study, after adjusting for all variables in multivariate regression models, subjective appraisal of burden was found to make a significant contribution (p<.05) to mental health related quality of life. The two dependent variables, anticipatory grief and mental health related quality of life, were significantly (p<.01) correlated at a bivariate level. In the follow up study, linear mixed modelling and multiple regression analysis of data found that subjective appraisal of burden and resilience were significantly associated (p<.05 and p<.01, respectively) with mental health related quality of life over time. In addition, bereavement and complicated grief were significantly associated (p<.05) with mental health following the death of the relative. In this study social support and satisfaction with end of life care were found to be statistically associated (p<.05) with physical health related quality of life over time. The strong relationship between grief of caregivers and their health related quality of life over the entire care giving trajectory and period following the death of their relative highlights the urgent need for further research and interventions in this area. Overall results indicate that addressing the risk and protective factors including subjective appraisal of their care giving role, resilience, social support and satisfaction with end of life care of their relative, has the potential to both ameliorate negative health outcomes and to promote improved health for these caregivers. This research provides important information for development of targeted and appropriate interventions that aim to promote resilience and reduce the personal burden on caregivers of people with dementia.

‘Connect and create’ : young people, YouTube and graffiti communities

Dominant discourses around young people and social networking in the mass media are littered with negative connotations and moral panics. While some scholars challenge this negativity, their focus has predominantly been upon the formation of friendships, the construction of identity and the presentation of the self online. We argue that as well as engaging in such areas, young people are also appropriating social networking sites, such as YouTube, as spaces in which they can engage in what Jean Burgess terms, ‘Vernacular Creativity’ – a way of describing and surfacing creative practices that emerge from non-elite, specific everyday contexts. Using case study material we consider the processes of Vernacular Creativity as engaged with by young people in relation to doing graffiti with YouTube. Through this, and given that graffiti is a cultural practise traditionally associated with physical space, we also consider points of continuity and discontinuity in relation to Vernacular Creativity mediated with YouTube and the significance of such things in enabling young people to connect and create with like-minded others.

The HealthyTexts study : A randomized controlled trial to improve skin cancer prevention behaviors among young people

Several randomized trials have found behavior change programs delivered via text messaging to be efficacious to improve preventive health behaviors such as physical activity and stopping smoking; however few have assessed its value in skin cancer prevention or early detection. The HealthyTexts study enrolled 678 participants 18–42 years, and assigned them to receive 21 text messages about skin cancer prevention, skin self-examination or physical activity(attention control) over the course of one year. Baseline data have been collected and outcomes will be assessed at three months and twelve months post intervention. The trial aims to increase the mean overall sun protection habits index score from 2.3 to 2.7 with a standard deviation of 0.5 (effect size of 0.5) and the proportion of people who conduct a whole-body skin self-examination by an absolute 10%. This paper describes the study design and participants' baseline characteristics. In addition, participants' goals for their health, and strategies they apply to achieve those goals are summarized.

Confronting the conspiracy of silence and denial of difference for late discovery adoptive persons and donor conceived people

This article outlines the impact that a conspiracy of silence and denial of difference has had on some adopted and donor conceived persons who have been lied to or misled about their origins. Factors discussed include deceit - expressed as a central secret which undermines the fabric of a family and through distortion mystifies communication processes; the shock of discovery - often revealed accidentally and the associated sense of betrayal when this occurs; and a series of losses, for example, kinship, medical history, culture and agency which result in having to rebuild personal identity. By providing those affected with a voice, validation and vindication healing can begin. Any feelings of disregard, of betrayal of trust, of anger, frustration, sorrow or loss, need to be regarded as real, expected, and above all, a valid reaction to what has occurred. The author is a 'late discoverer' of her adoption and draws on the information from her doctoral research on the same topic which was completed in 2012.

A Worthwhile Exchange - a Guide to Indigenous Philanthropy: research findings and success stories from philanthropy supporting Aboriginal and Torres Straight Islander People.

The Guide includes research findings from the Australian Centre for Philanthropy and Non Profit Studies at the Queensland University of Technology (QUT). This research probed the experiences of fourteen Indigenous people who have had different degrees of success in seeking funding from philanthropic organisations. This research shows how grantmakers can make a significant difference in the lives of Aboriginal and Torres Strait Islander people.

Recommending people in social networks using data mining

This thesis improves the process of recommending people to people in social networks using new clustering algorithms and ranking methods. The proposed system and methods are evaluated on the data collected from a real life social network. The empirical analysis of this research confirms that the proposed system and methods achieved improvements in the accuracy and efficiency of matching and recommending people, and overcome some of the problems that social matching systems usually suffer.

Young people, public space and new urbanism

The first of three articles in this issue addressing the public space topic considers public space and young people in the light of a range of papers delivered at the 27th International Conference on 'Making Cities Livable', held in Vienna, Austria, in July 2000. Under the overarching concept of the "liveable city" the conference themes of 'Rediscovery of public space' and 'Cities for the wellbeing of children' attracted a broad mix of those interested in the planning, design and management of urban space. A number of themes percolated through the conference which stimulated the writers to examine the nexus between urban development, young people and public space. There is an ongoing need to examine the meaning of public space in the face of powerful urban development trends. A model of public space practice is required which incorporates a vision of inclusive public spaces, fosters the interactivity of design, planning, social policy and management, and resources for greater communication and strategic action between stake holders from the most local of levels to those at state and international levels. The speed and magnitude of contemporary urban development makes community input and influence difficult, particularly for those impacted on by the exclusionary tendencies of much urban development. It is critical that a range of meaningful and sustainable mechanisms are developed which allow young people’s conceptions of what constitutes youth-friendly space to be directly made and taken account of.

‘We don’t leave our identities at the city limits’ : Aboriginal and Torres Strait Islander people living in urban localities

Aboriginal and Torres Strait Islander people who live in cities and towns are often thought of as ‘less Indigenous’ than those who live ‘in the bush’, as though they were ‘fake’ Aboriginal people — while ‘real’ Aboriginal people live ‘on communities’ and ‘real’ Torres Strait Islander people live ‘on islands’. Yet more than 70 percent of Australia’s Indigenous peoples live in urban locations (ABS 2007), and urban living is just as much part of a reality for Aboriginal and Torres Strait Islander people as living in remote discrete communities. This paper examines the contradictions and struggles that Aboriginal and Torres Strait Islander people experience when living in urban environments. It looks at the symbols of place and space on display in the Australian cities of Melbourne and Brisbane to demonstrate how prevailing social, political and economic values are displayed. Symbols of place and space are never neutral, and this paper argues that they can either marginalise and oppress urban Aboriginal and Torres Strait Islander people, or demonstrate that they are included and engaged.

Aboriginal and Torres Strait Islander people in Australia, education and health literacy

Health literacy is a vital tool to build health knowledge and enable empowerment in health decision making at a community and individual level. There are different views of what constitutes health literacy with the most inclusive addressing broadly the skills and competencies required “to seek out, comprehend, evaluate, and use health information and concepts to make informed choices, reduce health risks, and increase quality of life” (Zarcadoolas 2005). Poor health literacy has been shown to impact health seeking behaviour, access and awareness to preventive health.

Pain : the views of elderly people living in long term residential care settings

While an individual's beliefs and attitudes have long been considered important factors in how people respond to pain, few studies have attempted to provide in-depth descriptions of the nature of such pain beliefs and attitudes The aim of this research was to investigate the views of pain and pain management practices held by elderly people living in long-term residential care settings Ten 60–90 minute focus group interviews, each involving around five elderly people, were conducted in four large, long-term residential care settings in Brisbane, Australia Categories of beliefs and attitudes regarding pain were identified following analysis of the verbatim transcripts of these interviews Findings suggest that many elderly people living in long-term residential care settings may have become resigned to pain, that they are ambivalent about the benefit of any action for their pain and that they may be reluctant to express their pain Implications of these beliefs and attitudes are discussed