Transition to palliative care for people living with metastatic melanoma : preliminary findings from a grounded theory study

Melanoma is the most aggressive form of skin cancer. Five-year survival rates for patients with metastatic melanoma are less than 10%, with a median survival of 6 to 9 months. Despite a number of clinical trials for metastatic melanoma, the treatment options for patients are limited. Palliation is often the main goal of treatment. This constructivist grounded theory study is seeking to examine how people with metastatic melanoma negotiate the transition to palliative care. The method of sampling is purposive and data have been generated through semi-structured interviews with those with metastatic melanoma and partners. Open, focused and theoretical coding of data from 13 interviews conducted to date has produced analytical concepts that reflect how the transition is negotiated. These concepts depict ways in which individuals interact with a fragmented health care system and how meanings are constructed around the rapid progression of the disease and uncertain treatment decisions. The preliminary findings reported upon here are being further explored with a larger sample. The findings to date highlight the need for improved coordination of services for those living with metastatic melanoma, and improved support for individuals dealing with uncertainty.

Rural self-reliance: the impact on health experiences of people living with type II diabetes in rural Queensland, Australia

Objective: The objective of the study was to explore whether 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, and to develop a theoretical understanding that reflects constructs that may be more broadly applicable. Methods: The study applied constructivist grounded theory methods within an interpretive interactionist framework. Data from 39 semi-structured interviews with rural and urban type II diabetes patients and 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 normalized self-reliant diabetes management behaviours because this was congruent with the rural culture. Factors that informed the actions of normalization were relationships between participants and health care professionals, support, and access to individual resources. Conclusions: The findings point to ways in which rural self-reliance is conceived as the primary strategy of diabetes management. People face the paradox of engaging with a health care system that at the same time maximizes individual responsibility for health and minimizes 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 diabetes management behaviours is, however, contingent on relative resources. Where there is good primary care, there develops 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.

Living the indie life : mapping creative teams in a 48 hour game jam and playing with data

In contemporary game development circles the ‘game making jam’ has become an important rite of passage and baptism event, an exploration space and a central indie lifestyle affirmation and community event. Game jams have recently become a focus for design researchers interested in the creative process. In this paper we tell the story of an established local game jam and our various documentation and data collection methods. We present the beginnings of the current project, which seeks to map the creative teams and their process in the space of the challenge, and which aims to enable participants to be more than the objects of the data collection. A perceived issue is that typical documentation approaches are ‘about’ the event as opposed to ‘made by’ the participants and are thus both at odds with the spirit of the jam as a phenomenon and do not really access the rich playful potential of participant experience. In the data collection and visualisation projects described here, we focus on using collected data to re-include the participants in telling stories about their experiences of the event as a place-based experience. Our goal is to find a means to encourage production of ‘anecdata’ - data based on individual story telling that is subjective, malleable, and resists collection via formal mechanisms - and to enable mimesis, or active narrating, on the part of the participants. We present a concept design for data as game based on the logic of early medieval maps and we reflect on how we could enable participation in the data collection itself.

Inadequate management of medicines by the older-aged living in a retirement village

BACKGROUND: A comparison of the management of medicines by the older-aged living in freehold (fully owned) and rental homes in retirement villages has suggested that the older-aged living in rental, but not freehold, retirement villages may require help to manage their medicines. OBJECTIVE: The objective of this study was to investigate the management of medicines by the older-aged living independently in a leasehold (partly owned) home in retirement village to determine whether they also need help in managing their medicines. METHOD: Semi-structured interviews were conducted with 22 older-aged residents living in a leasehold retirement village. MAIN OUTCOME MEASURE: The main outcome measure was the perception of present and ongoing adherence. RESULTS: Amongst participants in the leasehold retirement village, with an average age of 82.9 years, the perceptions of present and ongoing adherence indicated that only 55 % of older-aged participants were adherent at the time of the study, and not likely to have problems with adherence within the next 6-12 months. Participants from the leasehold retirement village had a good understanding of 58 % of their illnesses. A mean of 9.8 medicines per person were prescribed. Cardiovascular medicines were the most commonly prescribed at 86 %. CONCLUSION: The older-aged living in leasehold retirement villages may require extra assistance/resources to manage their medicines.

Heritage & habitus : designing to support situated, living knowledge

We refer to an ongoing endeavour aimed to assist Indigenouscommunities in Australian in persisting their personal and cultural memories linked to temporally dynamic interactions in situ. The design enables Indigenous users to upload items they collect themselves (e.g. photographs, audio, video) using mobile phones,in their traditional lands into a topographical simulation; and, thento associate these items with their own hand-drawn markings inthe simulation. The design responds to the rich interconnectedness between Indigenous culture and the land and the need to converge spatial information technologies with practices that are not, inherently, conditioned by the geometries of the West. We propose that the design approach contributes to thinking about ways that mobile guides can respond to multiple realities and corporeal and affective phenomena.

The phenomena of auditory hallucination as described by Indonesian people living with schizophrenia

This study was a phenomenological inquiry of the experience of auditory hallucinations as described by 13 Indonesian people diagnosed with schizophrenia. The interviewees included 6 men and 7 women and they were aged between 19 and 56 years. Four themes emerged from this study: feeling more like a robot than a human being; voices of contradiction - a point of confusion; tattered relationships and family disarray; and normalizing the presence of voices as part of everyday life. The findings of this study have the potential to contribute to new understandings of how people live with and manage auditory hallucinations and so enhance client-centered nursing care.

Multiscale investigation of microfilament networks disruption in living cells

Actin is the most abundantly distributed protein in living cells which plays critical roles in the cell interior force generation and transmission. The fracture mechanism of microfilament networks, whose principle component is actin, would provide insights which can contribute to the understandings of self-protective characters of cytoskeleton. In this study, molecular simulations are conducted to investigate the molecular mechanisms of disruption of microfilament networks from the viewpoint of biophysics. By employing a coarse-grained (CG) model of actin filament networks, we focused on the ultimate strength and crack growth mode of microfilament networks that have dependency on the crack length. It can be found that, the fracture mechanism of microfilament network has dependency on the structural properties of microfilament networks. The structure flaws marginally change the strength of microfilament networks which would explain the self-protective characters of cytoskeleton.

Posttraumatic growth in family members living with a relative diagnosed with schizophrenia

Family members living with a relative diagnosed with schizophrenia have reported challenges and traumatic stressors, as well as perceived benefits and personal growth. This study explored factors associated with posttraumatic growth (PTG) within such families. Personality, stress, coping, social support and PTG were assessed in 110 family members. Results revealed that a multiplicative mediational path model with social support and emotional or instrumental coping strategies as multi-mediators had a significant indirect effect on the relationship between extraversion and PTG. Clinically relevant concepts that map onto the multi-mediator model are discussed, translating these findings into clinical practice to facilitate naturally occurring PTG processes.

The innovation potential of living-labs to strengthen small and medium enterprises in regional Australia

The small and medium enterprise (SME) sector has been the major source of well-being and employment opportunities in regional Australia. Consequently, fostering the innovative capacity of SMEs in regions that are struggling to grow their economies and distribute the growth fairly while not degrading the environment has never been more important. While SMEs generally face more uncertainties in relation to resources (e.g. financial, human and social capital) when compared to larger businesses, collaborative, cuttingedge mechanisms to enhance innovation capabilities of regional SMEs are lacking. This paper responds to this gap and proposes a Living Laboratory – an open, multi-disciplinary and multi-stakeholder action research platform where innovations can be co-created, tested and evaluated in the every-day environment of SMEs – as a way to strengthen the SME sector in regional Australia.

Psychotropic medication use in adolescents with intellectual disability living in the community

Purpose Information on the use of psychotropic medications in adolescents with intellectual disability is scant. Such information can guide interventions to improve psychotropic medication use in this population. We investigated the prevalence of, and factors associated with, psychotropic medication use in adolescents with intellectual disability in Australia who live in the community. Methods Cross-sectional data were obtained from adolescents with intellectual disability living in the community in South East Queensland, Australia, between February 2007 and September 2010. Self-reported information on medication use was extracted from a health screening tool. Demographic and medical data were collected through parent/caregiver surveys. Medications were classified according to the Anatomical Therapeutic Chemical classification system. Psychopathology was assessed using the Developmental Behaviour Checklist Short Form. Logistic regression analysis was used to assess the association of demographic and medical characteristics with psychotropic medication use. Results There were 176 participants (median age = 16 years, range = 11–19 years; 55% male). Psychotropics were used by 20% of participants. Psychostimulants were the commonest psychotropic class, used by 9% of participants. Multipsychotropic prescribing was not common with only seven participants using more than one psychotropic agent. After adjusting for potentially confounding variables, use of psychotropic medications was significantly associated with male gender (adjusted odds ratio = 3.6; 95% confidence interval = 1.3–9.5) and having major behaviour problems (3.1; 1.1–8.9). Conclusions Adolescents with intellectual disability use a wide range of psychotropic medications. Being male and having major behaviour problems are associated with the use of psychotropic medications. Research examining the rationale for psychotropic prescribing in this population is needed. Copyright © 2013 John Wiley & Sons, Ltd.

Front-line workers as intermediaries : the changing landscape of disability and employment services in Australia

Recent welfare reform in Australia has been constructed around the now-familiar principle of paid work and willingness to work as the fundamental marker of social citizenship. Beginning with the long-term unemployed in Australia in the mid 1990s, the scope of welfare reform has now extended to include people with a disability – which is a category of income support that has been growing in Australia. From the national government’s point of view this growth is a financial concern as it seeks to move as many people as possible into paid work to support the costs of an ageing population (DEWR, 2005). In doing so, the government has changed the meaning of disability in terms of eligibility for financial support from the state, and at the same time redefined the role of people with a disability with regard to work, and the role of the state with regard to the disabled. This has been a matter of some political contention in Australia.

Living in a broken world : how young children's well-being is supported through playing out their earthquake experiences

The therapeutic value of play can be shown in spontaneous play situations following children’s experiences of traumatic events. Following the events of the Christchurch earthquakes in New Zealand in 2010 and 2011, an investigation was conducted of how children used the earthquake event as a catalyst in pretend play with peers and in discussions with teachers. Supporting children’s well-being is a focus area in New Zealand early childhood education as it is a strand of the national curriculum, Te Whāriki (Ministry of Education [MoE], 1996). In this article, children are observed engaging in pretend play episodes and with Learning Story books to explore personal reflections of the earthquake, prompting the children to make reference to things being ‘broken’ and needing 'fixing.' Analysis shows how the content of the pretend play experiences helped the children to come to terms with their experiences. Affording children time and interactional opportunities to play out and discuss traumatic experiences contributes to the psychological well-being of participants following a traumatic event.

Environmental factors associated with active living in retirement village residents : findings from an exploratory qualitative enquiry

This exploratory enquiry employs qualitative methods to advance knowledge and understanding of physical environmental attributes related to active living among residents of Australian retirement villages. Six focus groups (n = 51 residents) were held and participants described how their current, and subsequently ideal, retirement village and neighborhood supported active lifestyles. Thematic analysis revealed three key environmental factors associated with active living: a positive social environment within the village; services and facilities provided in the village and wider neighborhood; and the presence of suitable pedestrian infrastructure. The unique discovery that environmental factors of both the retirement village and the surrounding neighborhood were associated with residents’ active living raises many questions for study. Findings informed the development of a survey instrument, and further understanding in this area has the potential to contribute to the design and siting practices of senior housing complexes within neighborhoods.