Inclusive universal design practice and activism : a case study

This paper reports on a unique approach to inclusive practice that responds to several critical issues highlighted in the first Universal Design (UD) Conference in Yokohama as well as in more recent literature on universal design. The approach, as explained in the paper, involves a not-for-profit community organization, university researchers, and a design action group comprising practitioners from across the design disciplines, together with other specialist consultants, developing a voluntary capacity an independent housing model for people with disabilities and their families or caretakers. With a focus on relationships and "a system that places human beings at the centre in all respects", this paper presents the approach and the ermerging theoretical framework which addresses three issues that afacan and Erbug (2009) propose hinder the integration of universal design with design practice, namely: theory-practice inconsistency involving the lack of flow-on of universal design awareness into design practice; a way of thinking that exhibits very little empathy with and understanding of the requirements of diverse users; and poorly implemented and coordinated collaboration and communication involving designers and other professionals (pp. 731 - 732).

Where does it say I have to do that? How can secondary schools enact assessment policy for students with disabilities

This paper describes effective ways secondary school leaders can enact curriculum policy, particularly assessment practices, to support learning for students with disabilities in mainstream schools. Assessment for learning (AfL) as a pedagogic practice, has gained recent importance through inclusion in curriculum policy in Queensland, Australia. AfL is the frequent assessment of student progress that identifies learning needs and informs future teaching and learning. Assessment of student progress of the standards based curriculum has provided challenges for schools attempting to meet the needs of “all” learners. This paper highlights findings of a small case study to model successful leadership practices used in an inclusive secondary school to improve achievement of students with disabilities through assessment. Successful leadership practices that can be generalized to improve achievement of all learners include making sense of policy for staff; developing staff common and shared beliefs and actions; organizing professional learning opportunities and arranging collaborative curriculum planning and co-teaching.

Quality of life and genetics in men with prostate cancer

As family history has been established as a risk factor for prostate cancer, attempts have been made to isolate predisposing genetic variants that are related to hereditary prostate cancer. With many genetic variants still to be identified and investigated, it is not yet possible to fully understand the impact of genetic variants on prostate cancer development. The high survival rates among men with prostate cancer have meant that other issues, such as quality of life (QoL), have also become important. Through their effect on a person’s health, a range of inherited genetic variants may potentially influence QoL in men with prostate cancer, even prior to treatment. Until now, limited research has been conducted on the relationship between genetics and QoL. Thus, this study contributes to an emerging field by aiming to identify certain genetic variants related to the QoL found in men with prostate cancer. It is hoped that this study may lead to future research that will identify men who have an increased risk of a poor QoL following prostate cancer treatment, which will aid in developing treatments that are individually tailored to support them. Previous studies have established that genetic variants of Vascular Endothelial Growth Factor (VEGF) and Insulin-like Growth Factor 1 (IGF-1) may play a role in prostate cancer development. VEGF and IGF-1 have also been reported to be associated with QoL in people with ovarian cancer and colorectal cancer, respectively. This study completed a series of secondary analyses using two major data-sets (from 850 men newly diagnosed with prostate cancer, and approximately 550 men from the general Queensland population), in which genetic variants of VEGF and IGF-1 were investigated for associations with prostate cancer susceptibility and QoL. The first aim of this research was to investigate genetic variants in the VEGF and IGF-I gene for an association with the risk of prostate cancer. It was found that one IGF-1 genetic variant (rs35765) had a statistically significant association with prostate cancer (p = 0.04), and one VEGF genetic variant (rs2146323) had a statistically significant association with advanced prostate cancer (p = 0.02). The estimates suggest that carriers of the CA and AA genotype for rs35765 may have a reduced risk of developing prostate cancer (Odds Ratio (OR) = 0.72, 95% Confidence Interval (CI) = 0.55, 0.95, OR = 0.60, 95% CI = 0.26, 1.39, respectively). Meanwhile, carriers of the CA and AA genotype for rs2146323 may be at increased risk of advanced prostate cancer, which was determined by a Gleason score of above 7 (OR = 1.72, 95% CI = 1.12, 2.63, OR = 1.90, 95% CI = 1.08, 3.34, respectively). Utilising the widely used short-form health survey, the SF-36v2, the second aim of this study was to investigate the relationship between prostate cancer and QoL prior to treatment. Assessing QoL at this time-point was important as little research has been conducted to evaluate if prostate cancer affects QoL regardless of treatment. The analyses found that mean SF-36v2 scale scores related to physical health were higher by at least 0.3 Standard Deviations (SD) among men with prostate cancer than the general population comparison group. This difference was considered clinically significant (defined by group differences in mean SF-36v2 scores by at least 0.3 SD). These differences were also statistically significant (p<0.05). Mean QoL scale scores related to mental health were similar between men with prostate cancer and those from the general population comparison group. The third aim of this study was to investigate genetic variants in the VEGF and IGF-1 gene for an association with QoL in prostate cancer patients prior to their treatment. It was essential to evaluate these relationships prior to treatment, before the involvement of these genes was potentially interrupted by treatment. The analyses found that some genetic variants had a small clinically significant association (0.3 SD) to some QoL domains experienced by these men. However, most relationships were not statistically significant (p>0.05). Most of the associations found identified that a small sub-group of men with prostate cancer (approximately 2%) reported, on average, a slightly better QoL than the majority of the prostate cancer patients. The fourth aim of this research was to investigate whether associations between genetic variants in VEGF and IGF-1 and QoL were specific to men with prostate cancer, or were also applicable to the general male population. It was found that twenty out of one-hundred relationships between the genetic variants of VEGF and IGF-1 and QoL health-measures and scales examined differed between these groups. In the majority of the relationships involving VEGF SNPs that differed, a clinically significant difference (0.3 or more SD) between mean scores among the genotype groups in prostate cancer patients was found, while mean scores among men from the general-population comparison group were similar. For example, prostate cancer participants who carried at least one T allele (CT or TT genotype) for rs3024994 had a clinically significant higher (0.3 SD) mean QoL score in terms of the role-physical scale, than participants who carried the CC genotype. This was not seen among men from the general population sample, as the mean score was similar between genotype groups. The opposite was seen in regards to the IGF-1 SNPs examined. Overall, these relationships were not considered to directly impact on the clinical options for men with prostate cancer. As this study utilised secondary data from two separate studies, there are a number of important limitations that should be acknowledged including issues of multiple comparisons, power, and missing or unavailable data. It is recommended that this study be replicated as a better-designed study that takes greater consideration of the many factors involved in prostate cancer and QoL. Investigation into other genetic variants of VEGF or IGF-1 is also warranted, as is consideration of other genes and their relationship with QoL. Through identifying certain genetic variants that have a modest association to prostate cancer, this project adds to the knowledge surrounding VEGF and IGF-1 and their role in prostate cancer susceptibility. Importantly, this project has also introduced the potential role genetics plays in QoL, through investigating the relationships between genetic variants of VEGF and IGF-1 and QoL.

Enhancing employment services for people with severe mental illness: the challenge of the Australian service environment

Objectives:  Comparatively few people with severe mental illness are employed despite evidence that many people within this group wish to obtain, can obtain and sustain employment, and that employment can contribute to recovery. This investigation aimed to: (i) describe the current policy and service environment within which people with severe mental illness receive employment services; (ii) identify evidence-based practices that improve employment outcomes for people with severe mental illness; (iii) determine the extent to which the current Australian policy environment is consistent with the implementation of evidence-based employment services for people with severe mental illness; and (iv) identify methods and priorities for enhancing employment services for Australians with severe mental illness through implementation of evidence-based practices. Method:  Current Australian practices were identified, having reference to policy and legal documents, funding body requirements and anecdotal reports. Evidence-based employment services for people with severe mental illness were identified through examination of published reviews and the results of recent controlled trials. Results:  Current policy settings support the provision of employment services for people with severe mental illness separate from clinical services. Recent studies have identified integration of clinical and employment services as a major factor in the effectiveness of employment services. This is usually achieved through co-location of employment and mental health services. Conclusions:  Optimal evidence-based employment services are needed by Australians with severe mental illness. Providing optimal services is a challenge in the current policy environment. Service integration may be achieved through enhanced intersectoral links between employment and mental health service providers as well as by co-locating employment specialists within a mental health care setting.

Psychological interventions for alcohol misuse among people with co-occurring depression or anxiety disorders: A systematic review

Abstract OBJECTIVE: Depression, anxiety and alcohol misuse frequently co-occur. While there is an extensive literature reporting on the efficacy of psychological treatments that target depression, anxiety or alcohol misuse separately, less research has examined treatments that address these disorders when they co-occur. We conducted a systematic review to determine whether psychological interventions that target alcohol misuse among people with co-occurring depressive or anxiety disorders are effective. DATA SOURCES: We systematically searched the PubMed and PsychINFO databases from inception to March 2010. Individual searches in alcohol, depression and anxiety were conducted, and were limited to 'human' published 'randomized controlled trials' or 'sequential allocation' articles written in English. STUDY SELECTION: We identified randomized controlled trials that compared manual guided psychological interventions for alcohol misuse among individuals with depressive or anxiety disorders. Of 1540 articles identified, eight met inclusion criteria for the review. DATA EXTRACTION: From each study, we recorded alcohol and mental health outcomes, and other relevant clinical factors including age, gender ratio, follow-up length and drop-out rates. Quality of studies was also assessed. DATA SYNTHESIS: Motivational interviewing and cognitive-behavioral interventions were associated with significant reductions in alcohol consumption and depressive and/or anxiety symptoms. Although brief interventions were associated with significant improvements in both mental health and alcohol use variables, longer interventions produced even better outcomes. CONCLUSIONS: There is accumulating evidence for the effectiveness of motivational interviewing and cognitive behavior therapy for people with co-occurring alcohol and depressive or anxiety disorders.

External orientation and business model adaptation in young and nascent firms : preliminary analysis from the CAUSSE project

Discovering factors that help or impede business model change is an important quest, both for researchers and practitioners. In this study we present preliminary findings based on the CAUSEE survey of young and nascent firms in Australia. In particular, we seek to determine an association between business model adaptation and external orientation among young and nascent firms within the random sample and amongst an oversample of high potential firms. The concept of external orientation is made operational by asking respondents whether, and to what extent, they rely on certain sources of advice and information. We find that high potential firms are more likely to have made at least some change to their business model, that greater use of external sources of advice is generally significantly associated with business model adaptation, but also that there appear to be different patterns of behaviour between the random sample and the over sample.

The role of physical activity in the lives of people with lymphoedema following cancer treatment : a social constructionist study

Lymphoedema is a chronic condition predominantly affecting the limbs, although it can involve the trunk and other areas of the body. It is characterised by swelling due to excess accumulation of fluid in body tissues. Secondary lymphoedema, which arises following cancer treatment, is the more common form of lymphoedema in developed countries. At least 20% of those diagnosed with the most common cancers will develop lymphoedema. This is a concern in Australia as incidence of these cancers is increasing. Cancer survival rates are also increasing. Currently, this equates to 9 300 new cases of secondary lymphoedema diagnosed each year. Considerable physical and psychosocial impacts of lymphoedema have been reported and its subsequent impact on health-related quality of life can exacerbate other side effects of cancer treatment. Exercise following cancer treatment has been shown to significantly reduce the impact of treatment side effects, improve quality of life and physical status. While participating in exercise does not increase risk nor exacerbate existing lymphoedema, reductions in incidence of lymphoedema exacerbations and associated symptoms have been observed in women participating in regular weight lifting following breast cancer treatment. Despite these benefits, lymphoedema prevention and management advice cautions people with lymphoedema against „repetitive use. or „overuse. of their affected arm. It is possible that this advice creates a barrier to participation in physical activity; however, little is known about the relationship between physical activity and lymphoedema. In addition, the majority of studies examining the experiences of people living with lymphoedema and the impact of the condition have been predominantly conducted internationally and have focused on women following breast cancer. This study sought to explore firstly, how men and women construct their experience of living with lymphoedema following treatment for a range of cancers in the context of everyday life in Australia; and secondly, to analyse the role of physical activity in the lives of those living with lymphoedema following cancer treatment. A social constructivist grounded theory approach was taken to explore these objectives as it is acknowledged that human actions and the meanings associated with these actions are influenced by the interaction between the self and the social world. It is also acknowledged that the research process itself is a social construction between the researcher and participant. Purposive sampling techniques were used to recruit a total of 29 participants from a variety of sources. Telephone interviews and focus groups were conducted to collect data. Data were concurrently collected and analysed and analysis was conducted using the constant comparative method. The core category that developed in objective one was „sense of self‟. The self was defined by perceptions participants held of themselves and their identity prior to a lymphoedema diagnosis and changes to their perceptions and identity since diagnosis. Three conceptual categories which related to each other and to „sense of self‟ were developed through the process of coding that represented the process of how participants constructed their experiences living with secondary lymphoedema in the context of everyday life. Firstly, altered normalcy reflected the physical and psychosocial changes experienced and the effect it had on their lives. Secondly, „accidental journey‟ reflected participants‟ journey with the heath care system prior to diagnosis through to longer term management. Thirdly, renegotiating control revealed participants perceived control over lymphoedema and their ability to participate in daily activities previously enjoyed. These findings revealed the failure of the broader health system to recognise the significant and chronic nature of a lymphoedema diagnosis following cancer treatment with greater understanding, knowledge and support from health professionals being needed. The findings also reveal access to health professionals trained in lymphoedema management, a comprehensive approach encompassing both physical and psychosocial needs and provision of practical and meaningful guidelines supported by scientific evidence would contribute to improved treatment and management of the condition. The key findings for objective two were that people with lymphoedema define physical activity in different ways. Physical activity post-diagnosis was perceived as important by most for a variety of reasons ranging from everyday functioning, to physical and psychosocial health benefits. Issues relating to the impact of lymphoedema on physical activity related to the impact on peoples‟ ability to be physically active, confusion about acceptable forms of physical activity and barriers that lymphoedema presented to being physically active. A relationship between how people construct their experiences with lymphoedema and the role of physical activity was also established. The contribution of physical activity to the lives of people living with lymphoedema following cancer treatment appeared to be influenced by their sense of self as socially constructed through their experiences prior to diagnosis and following diagnosis with lymphoedema. The influence of pre-lymphoedema habits, norms and beliefs suggests the importance of effective health promotion messages to encourage physical activity among the general population and specific messages and guidelines particular to the needs of those diagnosed with lymphoedema following cancer treatment. The influence of participant.s social constructions on the lymphoedema experience highlights the importance of improving interactions between the overall health care system and patients, providing a clear treatment plan, providing evidence-based and clear advice about participation in appropriate physical activity, which in doing so will limit the physical and psychosocial effect of lymphoedema and providing comprehensive physical and psychosocial support to those living with the condition and their families. This study has contributed to a deep understanding of people.s experiences with lymphoedema following cancer treatment and the role of physical activity in the context of daily life in Australia. Findings from this study lead to recommendations for advocacy, a comprehensive approach to diagnosis, treatment and management, and specific areas for future research.

(Dia)logics of difference disability, performance and spectatorship in Liz Crow's Resistance on the Plinth

In this article I examine how artists with disabilities use public-space performance to encourage passersby to reflect on the construction of public discourses about disability – and, therefore, the construction of publics that are potentially inclusive of people with disabilities. I concentrate on British storyteller, artist, filmmaker and activist Liz Crow's Resistance on the Plinth, one of four pieces Crow has produced over the past three years as part of the Resistance series, an examination of the Nazi regime's Aktion T4 programme, which resulted in the mass murder of a quarter of a million people with disabilities. Created in August 2009 as part of Antony Gormley's One & Other public art project, the piece featured Crow dressed in a Nazi uniform and seated in a wheelchair on the Fourth Plinth in London's Trafalgar Square. For Crow – who creates work in a British context where public debate about the eugenics of genetic testing, euthanasia and assisted suicide is prevalent in the media – the Nazi atrocity is still rich in confronting imagery, resonant and relevant in a contemporary context. In this article, I consider the challenges that Gormley's extremely public One & Other presented for professional artists like Crow, who are committed to intervening in public perceptions of identity, community and culture. I describe the structural choices Crow made to provoke debate about the cultural logics embodied in the image she presented, and analyse some of the spectatorial responses from online forums such as the One & Other website, Facebook and Twitter immediately following the event.

The Working After Cancer Study (WACS): a population-based study of middle-aged workers diagnosed with colorectal cancer and their return to work experiences

Background The number of middle-aged working individuals being diagnosed with cancer is increasing and so too will disruptions to their employment. The aim of the Working After Cancer Study is to examine the changes to work participation in the 12 months following a diagnosis of primary colorectal cancer. The study will identify barriers to work resumption, describe limitations on workforce participation, and evaluate the influence of these factors on health-related quality of life. Methods/Design An observational population-based study has been designed involving 260 adults newly-diagnosed with colorectal cancer between January 2010 and September 2011 and who were in paid employment at the time they were diagnosed. These cancer cases will be compared to a nationally representative comparison group of 520 adults with no history of cancer from the general population. Eligible cases will have a histologically confirmed diagnosis of colorectal cancer and will be identified through the Queensland Cancer Registry. Data on the comparison group will be drawn from the Household, Income and Labour Dynamics in Australia (HILDA) Survey. Data collection for the cancer group will occur at 6 and 12 months after diagnosis, with work questions also asked about the time of diagnosis, while retrospective data on the comparison group will be come from HILDA Waves 2009 and 2010. Using validated instruments administered via telephone and postal surveys, data will be collected on socio-demographic factors, work status and circumstances, and health-related quality of life (HRQoL) for both groups while the cases will have additional data collected on cancer treatment and symptoms, work productivity and cancer-related HRQoL. Primary outcomes include change in work participation at 12 months, time to work re-entry, work limitations and change in HRQoL status. Discussion This study will address the reasons for work cessation after cancer, the mechanisms people use to remain working and existing workplace support structures and the implications for individuals, families and workplaces. It may also provide key information for governments on productivity losses.

Ageing of people with an intellectual disability: Effective training for frontline workers

While the attainment of late life represents a significant achievement for people with an intellectual disability, increased life expectancy has resulted in growing concerns about the extent to which disability service providers are ready to meet the changing needs of increasing numbers of older people and facilitate their ongoing social inclusion. Training of frontline disability staff is widely accepted as an effective strategy for increasing organisational capacity to contribute to improved quality of life for people with an intellectual disability. The study identifies training needs analyses and 'ready-to-deliver' training programs for frontline disability services staff working with adults with an intellectual disability who are ageing, assesses whether the training programs contribute to improved quality of life outcomes for service users, and makes recommendations for future research and development of training for disability services staff who work with older people with intellectual disability.

A limb lost every 3 hours: can Australia reduce amputations in people with diabetes?

Recommendations to improve national diabetes-related foot disease (DRFD) care • National data collection on incidence and outcomes of DRFD. • Improved access to care, through the Medicare Benefits Schedule, for people with diabetes who have a current or past foot complication. • Standardised national model for interdisciplinary DRFD care. • National accreditation of interdisciplinary foot clinics and staff. • Subsidies for evidence-based treatments for DRFD, including medical-grade footwear and pressure off-loading devices. • Holistic diabetes care initiatives to “close the gap” on inequities in health outcomes for Aboriginal and Torres Strait Islander peoples.

The development of a supportive care needs assessment tool for Indigenous people with cancer

Background: Little is known about the supportive care needs of Indigenous people with cancer and to date, existing needs assessment tools have not considered cultural issues for this population. We aimed to adapt an existing supportive care needs assessment tool for use with Indigenous Australians with cancer. Methods: Face-to-face interviews with Indigenous cancer patients (n = 29) and five focus groups with Indigenous key-informants (n = 23) were conducted to assess the face and content validity, cultural acceptability, utility and relevance of the Supportive Care Needs Survey - Short Form 34 (SCNS-SF34) for use with Indigenous patients with cancer. Results: All items from the SCNS-SF34 were shortened and changed to use more appropriate language (e.g. the word 'anxiety' was substituted with 'worry'). Seven questions were omitted (e.g. items on death and future considerations) as they were deemed culturally inappropriate or irrelevant and 12 items were added (e.g. accessible transport). Optional instructions were added before the sexual items. The design and response format of the SCNS-SF34 was modified to make it easier to use for Indigenous cancer patients. Given the extensive modifications to the SCNS-SF34 and the liklihood of a different factor structure we consider this tool to be a new tool rather than a modification. The Supportive care needs assessment tool for Indigenous people (SCNAT-IP) shows promising face and content validity and will be useful in informing services where they need to direct their attention for these patients. Conclusions: Indigenous people with cancer have language, customs and specific needs that are not accommodated within the standard SCNS-SF34. Our SCNAT-IP improves acceptability, relevance and face validity for Indigenous-specific concerns. Our SCNAT-IP will allow screening for supportive care needs that are specific to Indigenous cancer patients' and greatly inform targeted policy development and practice.