Digital technologies and musical participation for people with intellectual disabilities

Research on the aspirations of people with intellectual disabilities documents the importance of alternative zones of inclusion where they can assert their own definitions of ability and normality. This stands in contrast to assumptions concerning technology and disability that position technology as ‘normalising’ the disabled body. This paper reports on the role of a digital music jamming tool in providing access to creative practice by people with intellectual disabilities. The tool contributed to the development of a spatio-temporal zone to enable aesthetic agency within and beyond the contexts of deinstitutionalised care. The research identifies the interactions among tools, individuals and groups that facilitated participants’ agency in shaping the form of musical practice. Further, we document the properties of emergent interaction - supported by a tool oriented to enabling music improvisation - as potentially resisting assumptions regarding normalisation.

Increasing disaster resilience of people and property through fostering collaboration in coastal high hazard zones

As evidenced with the 2011 floods the state of Queensland in Australia is quite vulnerable to this kind of disaster. Climate change will increase the frequency and magnitude of such events and will have a variety of other impacts. To deal with these governments at all levels need to be prepared and work together. Since most of the population of the state is located in the coastal areas and these areas are more vulnerable to the impacts of climate change this paper examines climate change adaptation efforts in coastal Queensland. The paper is part of a more comprehensive project which looks at the critical linkages between land use and transport planning in coastal Queensland, especially in light of increased frequencies of cyclonic activity and other impacts associated with climate change. The aim is improving coordination between local and state government in addressing land use and transport planning in coastal high hazard areas. By increasing the ability of local governments and state agencies to coordinate planning activities, we can help adapt to impacts of climate change. Towards that end, we will look at the ways that these groups currently interact, especially with regard to issues involving uncertainty related to climate change impacts. Through surveys and interviews of Queensland coastal local governments and state level planning agencies on how they coordinate their planning activities at different levels as well as how much they take into account the linkage of transportation and land use we aim to identify the weaknesses of the current planning system in responding to the challenges of climate change adaptation. The project will identify opportunities for improving the ways we plan and coordinate planning, and make recommendations to improve resilience in advance of disasters so as to help speed up recovery when they occur.

Do people gamble with their lives : The relationship between risky driving behaviour and other risky behaviours

General risky behaviour is explored for correlation with risky driving behaviour in light of two theories, self-control and cross-situational consistency. Identification of general risky behaviours associated with risky driving behaviour, and the theory that best predicts the behaviours, will enable better targeting of intervention and education strategies to reduce driving related fatalities and injuries. A correlational study using participants (N=152) drawn from first year university undergraduates and the public surveyed their lifestyle and behaviours. Relationships were found between risky driving behaviours and other risky behaviours such as alcohol consumption, cannabis use and performing unlawful activities. No significant differences were found between genders, with the exception that males were more likely to believe that they were at risk of injury from their employment, χ2 (1, N = 152) = 4.49, p = .03, were more likely to have performed an unlawful offence, χ2 (1, N = 152) = 11.77, p = .001 and were more likely to drink drive, t (55.41) = -3.87, p < .001, mean difference = -0.63, CI 95% (-0.9, -0.37). People engaged in risky driving behaviours were more likely to engage in other risky behaviours. The theories that were explored were unable to accurately predict an association between general risky behaviour and driving without a license or when disqualified. Cross-situational consistency explained 20% (R2adj = .16) of the variance in which people engaged in risky driving with low self-control theory explaining an additional 0.3% variance (R2change = .003), F (8,143) = 6.92, p < .001. Driving while under the influence of alcohol could be predicted by risky behaviours in lifestyle, health, smoking, cannabis use and alcohol consumption, F (8,143) = 6.92, p < .001. The addition of self-control was not significant.

Cultural factors affecting tertiary education access for Bundjalung men

Despite documented changes to mainstream educational systems, Indigenous educational achievements are still at critically low levels across all phases of formal education. According to the Australian Bureau of Statistics (2011) Indigenous students are still less likely than non-Indigenous students to complete their final years of schooling (45% compared with 77% in 2009); tertiary level entry and outcomes are also significantly lower than non-Indigenous entry and outcomes. Although significant research has focused on the area of Indigenous education, in particular, identifying and making recommendations on how to close educational gaps between Indigenous and non-Indigenous people, these studies have failed to bring about the change needed and to engage successfully with Indigenous communities and draw on Indigenous communities’ insights for best practice. This thesis focuses on Indigenous perspectives and takes a closer look at the cultural factors that impact on tertiary education access for Indigenous young men who come from a Bundjalung community on the far north coast of northern New South Wales. To date, this community has not been the focus of serious postgraduate study. Their experiences and the values and ideas of their community have not been investigated. To do this, the study uses an Indigenous methodological framework. It draws on Indigenous Standpoint Theory to analyse data through concepts of the cultural interface and tensions (Nakata, 2007, pp. 195-217). The study’s framing also draws on decolonising methods (Porsanger, 2004; Smith, 1999) and Indigenist research methods (Rigney, 1997). Such methodologies are intended to benefit both the research participants (community members) and the researcher. In doing so, the study draws on Creswell’s (2008) methods of restorying and retelling to analyse the participants’ interviews and yarns about their lives and experiences relating to tertiary educational access. The research process occurred in multiple stages: (1) selection of research sites, (2) granting of access which was requested through consultation with local Aboriginal Elders and through the local Aboriginal Lands Council, (3) conducting of interviews with participants/ data collection, (4) analysis of data, (5) documentation of findings, (6) theory development, and (7) reporting back to the nominated Indigenous community on the progress and findings of the research. The benefits of this research are numerous. First, this study addresses an issue that has been identified from within the local Aboriginal community as an issue of high precedence, looking at the cultural factors surrounding the underrepresentation of Indigenous people accessing tertiary education. This is not only of local significance but has been identified in the literature as a local, national and international area of concern amongst Indigenous peoples (Department of Economic and Social Affairs, 2009; Herbert, 2010; King, 2011). Secondly, the study draws on local Indigenous knowledges and learning processes from within a Bundjalung community to gain inside perspectives, namely the cultural factors that are being expressed from a range of Indigenous community members – young men, community Elders and community members – and finding out what they perceive inhibit and/or promote tertiary education participation within their community. Such perspectives are rarely heard. Finally, recommendations made from this study are aimed at revealing investigative styles that may be utilised by Western institutions to improve access for Indigenous young men living in the Narlumdarlum1 region in the tertiary context.

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.

A qualitative investigation into the different health experiences of people living with type II diabetes, in the rural environments

Study Rationale The objective of the study was to explore if and how rural culture influences type II diabetes management and to better understand the social processes that rural people construct in coping with diabetes and its complications. In particular, the study aimed to analyse the interface and interactions between rural people with type II diabetes and the Australian health care system. Theoretical framework and methods The research applied constructivist grounded theory methods within an interpretive interactionist framework. Data from 39 semi-structured interviews with rural and urban people with type II diabetes plus a mix of rural health care providers were analysed to develop a theoretical understanding of the social processes that define diabetes management in that context. Results The analysis suggests that although type II diabetes imposes limitations that require adjustment and adaptation these processes are actively negotiated by rural people within the environmental context to fit the salient social understandings of autonomy and self-reliance. Thus people normalised self-reliant diabetes management behaviours because this was congruent with the rural culture. Factors that informed the actions of normalisation were the relationships between participants and health care professions, support and access to individual resources. Conclusions The findings point to ways in which rural self-reliance is conceived as the primary strategy of diabetic management. People face the paradox of engaging with a health care system that at the same time maximises individual responsibility for health and minimises the social support by which individuals manage the condition. The emphasis on self-reliance gives some legitimacy to a lack of prevention and chronic care services. Success of diabetic management behaviours is contingent on relative resources. Where there is good primary care there develop a number of downstream effects including a sense of empowerment to manage difficult rural environmental circumstances. This has particular bearing on health outcomes for people with fewer resources.

Nifty after fifty: evaluation of a physical activity directory for older people

Objective: To develop a physical activity directory (PAD) for Brisbane people over the age of 50 years for distribution by two methods (given or requested), and to determine its effectiveness in raising awareness and encouraging older people to participate in local physical activity options. Methods: Baseline demographic data and stage of change was collected from 224 participants who received the directory. Participants were interviewed by telephone six weeks later to determine their use of the directory on a number of dimensions. Results: Most participants interviewed at follow-up remembered reading the directory. Participants who requested the directory were significantly more likely than those who were given it to: be contemplators, read the directory, plan to ring a number, plan to attend a class, and to share the directory with others. Participants who were contemplators were significantly more likely to have participated in physical activity of their own and rang a number from the directory. The directory increased over half the participants' awareness of local physical activity options, yet only 7% reported ringing a number and 15% reported doing their own physical activity. Conclusions: The directory was more effective in raising awareness about physical activity options than encouraging people to participate in physical activity, and participants with short-term plans to be more active were more likely to have used the directory. Implications: The directory, even when linked with other services, raises awareness about physical activity options, but has minimal short-term influence on participation.

The People's House : Queensland Parliament House

22 mins documentary

Exploring the information practices of people with end stage kidney disease

This small exploratory study sought to understand how people with End Stage Kidney Disease (ESKD) experience the information environment and what information practices they employ in order to inform the decisions they make in relation to treatment and care. Using a constructivist methodology, in-depth interviews were conducted with five people who were receiving haemodialysis in two small satellite dialysis units located in regional and rural communities in New South Wales, Australia. Thematic analysis revealed two types of patients. The first type appears to adopt a received view of information, who do not question their condition; and passively accept information. In the other type, patients were found to be engaged; they actively identified their information needs and quickly learned what that they needed to ask and who to ask. Knowing the information practices of people with ESKD is useful for nephrology nurses when providing patient education.

Examining the health related quality of life of people with end stage kidney disease living in Hanoi, Vietnam

Background: The prevalence of end-stage kidney disease (ESKD) patients is increasing in Vietnam; however, the impact of ESKD and its treatment on a person’s quality of life (QOL) is not well understood. Objective: This research sought to examine the association between monthly income, comorbidity, length of time on dialysis, social support and health-related quality of life (HRQOL) among Vietnamese ESKD patients. Method: Using a descriptive design, 95 patients who were receiving haemodialysis (HD) and peritoneal dialysis (PD) from one hospital in Hanoi, were conveniently sampled. Results: ESKD patients reported having a moderate level of HRQOL. Factors associated with QOL were social support (r= .268, p<.05), comorbid health conditions (r= –.185, p<.05), and length of time on dialysis (r= .182, p<.05). However, monthly income was not significantly related to HRQOL (p>.05). Conclusion: The results seem to indicate that ESKD patients in Vietnam have a high level of support from family members, friends and significant others. There was also a negative impact of comorbid conditions on the QOL of these patients. Based on the results of this study, nurses ought to develop nursing interventions which will lead to a better QOL for patients, and further research into the QOL for ESKD patients in Vietnam is warranted.

What information-related activities do people with ESKD use?

Background Information practice is an emerging area of research that seeks to reveal how people learn to connect with the complex multimodal information landscapes that informs their ability to make decisions. Previous research has identified that people with end stage kidney disease (ESKD) tend to adopt a ‘received’ or ‘engaged’ view of information but little is known about the activities of information practice. Objectives This research project sought to identify the: i) information-related activities; and ii) how information is used. Methods Using a constructivist qualitative methodology, ten people with ESKD living in a large metropolitan city were purposively selected and interviewed. Data was subject to thematic analysis by researchers from nursing and information science. Saturation of themes was achieved. Results Participants were between 38 and 72 years, had been receiving kidney replacement therapy from 2 weeks to 31 years. Eight participants reported having access to the internet but none participated in chat rooms. The activities were conceptualized into themes as listening, seeking, searching, sharing and observing. These activities enabled people to create, reflect on and evaluate the information needed to inform their decision-making Conclusion/Application to Clinical Practice The information practice research approach will enable a better understanding of the underlying relationship between information, knowledge and experience to be better understood. For renal nurses who are involved in patient education being able to recognise the way people use information will assist in individualizing educational sessions and tailoring teaching strategies to make it more meaningful.

'It had to be my choice' Indigenous smoking cessation and negotiations of risk, resistance and resilience

While Australia is considered a world leader in tobacco control, smoking rates within the Aboriginal and Torres Strait Islander population have not declined at the same rate. This failure highlights an obvious shortcoming of mainstream anti-smoking efforts to effectively understand and engage with the socio-cultural context of Indigenous smoking and smoking cessation experiences. The purpose of this article is to explore the narrative accounts of 20 Indigenous ex-smokers within an urban community and determine the motivators and enablers for successful smoking cessation. Our findings indicated that health risk narratives and the associated social stigma produced through anti-smoking campaigns formed part of a broader apparatus of oppression among Indigenous people, often inspiring resistance and resentment rather than compliance. Instead, a significant life event and supportive relationships were the most useful predictors of successful smoking cessation acting as both a motivator and enabler to behavioural change. Indigenous smoking cessation narratives most commonly involved changing and reordering a person’s life and identity and autonomy over this process was the critical building block to reclaiming control over nicotine addiction. Most promisingly, at an individual level, we found the important role that individual health professionals played in encouraging and supporting Indigenous smoking cessation through positive rather than punitive interactions. More broadly, our findings highlighted the central importance of resilience, empowerment, and trust within health promotion practice.

Risk factors for malnutrition in community-dwelling people with Parkinson’s disease

In the elderly, the risks for protein-energy malnutrition from older age, dementia, depression and living alone have been well-documented. Other risk factors including anorexia, gastrointestinal dysfunction, loss of olfactory and taste senses and early satiety have also been suggested to contribute to poor nutritional status. In Parkinson’s disease (PD), it has been suggested that the disease symptoms may predispose people with PD to malnutrition. However, the risks for malnutrition in this population are not well-understood. The current study’s aim was to determine malnutrition risk factors in community-dwelling adults with PD. Nutritional status was assessed using the Patient-Generated Subjective Global Assessment (PG-SGA). Data about age, time since diagnosis, medications and living situation were collected. Levodopa equivalent doses (LDED) and LDED per kg body weight (mg/kg) were calculated. Depression and anxiety were measured using the Beck’s Depression Inventory (BDI) and Spielberger Trait Anxiety questionnaire, respectively. Cognitive function was assessed using the Addenbrooke’s Cognitive Examination (ACE-R). Non-motor symptoms were assessed using the Scales for Outcomes in Parkinson's disease-Autonomic (SCOPA-AUT) and Modified Constipation Assessment Scale (MCAS). A total of 125 community-dwelling people with PD were included, average age of 70.2±9.3(35-92) years and average time since diagnosis of 7.3±5.9(0–31) years. Average body mass index (BMI) was 26.0±5.5kg/m2. Of these, 15% (n=19) were malnourished (SGA-B). Multivariate logistic regression analysis revealed that older age (OR=1.16, CI=1.02-1.31), more depressive symptoms (OR=1.26, CI=1.07-1.48), lower levels of anxiety (OR=.90, CI=.82-.99), and higher LDED per kg body weight (OR=1.57, CI=1.14-2.15) significantly increased malnutrition risk. Cognitive function, living situation, number of prescription medications, LDED, years since diagnosis and the severity of non-motor symptoms did not significantly influence malnutrition risk. Malnutrition results in poorer health outcomes. Proactively addressing the risk factors can help prevent declines in nutritional status. In the current study, older people with PD with depression and greater amounts of levodopa per body weight were at increased malnutrition risk.

Malnutrition in a sample of community-dwelling people with Parkinson’s disease

Objective: Malnutrition results in poor health outcomes, and people with Parkinson’s disease may be more at risk of malnutrition. However, the prevalence of malnutrition in Parkinson’s disease is not yet well defined. The aim of this study is to provide an estimate of the extent of malnutrition in community-dwelling people with Parkinson’s disease. Methods: This is a cross-sectional study of people with Parkinson’s disease residing within a 2 hour driving radius of Brisbane, Australia. The Subjective Global Assessment (SGA) and scored Patient Generated Subjective Global Assessment (PG-SGA) were used to assess nutritional status. Body weight, standing or knee height, mid-arm circumference and waist circumference were measured. Results: Nineteen (15%) of the participants were moderately malnourished (SGA-B). The median PG-SGA score of the SGA-B group was 8 (4 – 15), significantly higher than the SGA-A group, U=1860.5,p<.05. The symptoms most influencing intake were loss of appetite, constipation, early satiety and problems swallowing. Conclusions: As with other populations, malnutrition remains under-recognised and undiagnosed in people with Parkinson’s disease. Regular screening of nutritional status in people with Parkinson’s disease by health professionals with whom they have regular contact should occur to identify those who may benefit from further nutrition assessment and intervention.