Antiretroviral therapy (ART) adherence among people living with HIV/AIDS (PLHIV) in the north of Vietnam : a multi-method approach

The antiretroviral therapy (ART) program for People Living with HIV/AIDS (PLHIV) in Vietnam has been scaled up rapidly in recent years (from 50 clients in 2003 to almost 38,000 in 2009). ART success is highly dependent on the ability of the patients to fully adhere to the prescribed treatment regimen. Despite the remarkable extension of ART programs in Vietnam, HIV/AIDS program managers still have little reliable data on levels of ART adherence and factors that might promote or reduce adherence. Several previous studies in Vietnam estimated extremely high levels of ART adherence among their samples, although there are reasons to question the veracity of the conclusion that adherence is nearly perfect. Further, no study has quantitatively assessed the factors influencing ART adherence. In order to reduce these gaps, this study was designed to include several phases and used a multi-method approach to examine levels of ART non-adherence and its relationship to a range of demographic, clinical, social and psychological factors. The study began with an exploratory qualitative phase employing four focus group discussions and 30 in-depth interviews with PLHIV, peer educators, carers and health care providers (HCPs). Survey interviews were completed with 615 PLHIV in five rural and urban out-patient clinics in northern Vietnam using an Audio Computer Assisted Self-Interview (ACASI) and clinical records extraction. The survey instrument was carefully developed through a systematic procedure to ensure its reliability and validity. Cultural appropriateness was considered in the design and implementation of both the qualitative study and the cross sectional survey. The qualitative study uncovered several contrary perceptions between health care providers and HIV/AIDS patients regarding the true levels of ART adherence. Health care providers often stated that most of their patients closely adhered to their regimens, while PLHIV and their peers reported that “it is not easy” to do so. The quantitative survey findings supported the PLHIV and their peers’ point of view in the qualitative study, because non-adherence to ART was relatively common among the study sample. Using the ACASI technique, the estimated prevalence of onemonth non-adherence measured by the Visual Analogue Scale (VAS) was 24.9% and the prevalence of four-day not-on-time-adherence using the modified Adult AIDS Clinical Trials Group (AACTG) instrument was 29%. Observed agreement between the two measures was 84% and kappa coefficient was 0.60 (SE=0.04 and p<0.0001). The good agreement between the two measures in the current study is consistent with those found in previous research and provides evidence of cross-validation of the estimated adherence levels. The qualitative study was also valuable in suggesting important variables for the survey conceptual framework and instrument development. The survey confirmed significant correlations between two measures of ART adherence (i.e. dose adherence and time adherence) and many factors identified in the qualitative study, but failed to find evidence of significant correlations of some other factors and ART adherence. Non-adherence to ART was significantly associated with untreated depression, heavy alcohol use, illicit drug use, experiences with medication side-effects, chance health locus of control, low quality of information from HCPs, low satisfaction with received support and poor social connectedness. No multivariate association was observed between ART adherence and age, gender, education, duration of ART, the use of adherence aids, disclosure of ART, patients’ ability to initiate communication with HCPs or distance between clinic and patients’ residence. This is the largest study yet reported in Asia to examine non-adherence to ART and its possible determinants. The evidence strongly supports recent calls from other developing nations for HIV/AIDS services to provide screening, counseling and treatment for patients with depressive symptoms, heavy use of alcohol and substance use. Counseling should also address fatalistic beliefs about chance or luck determining health outcomes. The data suggest that adherence could be enhanced by regularly providing information on ART and assisting patients to maintain social connectedness with their family and the community. This study highlights the benefits of using a multi-method approach in examining complex barriers and facilitators of medication adherence. It also demonstrated the utility of the ACASI interview method to enhance open disclosure by people living with HIV/AIDS and thus, increase the veracity of self-reported data.

Large scale participatory acoustic sensor data analysis : tools and reputation models to enhance effectiveness

Acoustic sensors play an important role in augmenting the traditional biodiversity monitoring activities carried out by ecologists and conservation biologists. With this ability however comes the burden of analysing large volumes of complex acoustic data. Given the complexity of acoustic sensor data, fully automated analysis for a wide range of species is still a significant challenge. This research investigates the use of citizen scientists to analyse large volumes of environmental acoustic data in order to identify bird species. Specifically, it investigates ways in which the efficiency of a user can be improved through the use of species identification tools and the use of reputation models to predict the accuracy of users with unidentified skill levels. Initial experimental results are reported.

Using participatory action research in a community-based initiative addressing complex mental health needs

Objective: This paper describes the first phase of a larger project that utilizes participatory action research to examine complex mental health needs across an extensive group of stakeholders in the community. Method: Within an objective qualitative analysis of focus group discussions the social ecological model is utilized to explore how integrative activities can be informed, planned and implemented across multiple elements and levels of a system. Seventy-one primary care workers, managers, policy-makers, consumers and carers from across the southern metropolitan and Gippsland regions of Victoria, Australia took part in seven focus groups. All groups responded to an identical set of focusing questions. Results: Participants produced an explanatory model describing the service system, as it relates to people with complex needs, across the levels of social ecological analysis. Qualitative themes analysis identified four priority areas to be addressed in order to improve the system's capacity for working with complexity. These included: (i) system fragmentation; (ii) integrative case management practices; (iii) community attitudes; and (iv) money and resources. Conclusions: The emergent themes provide clues as to how complexity is constructed and interpreted across the system of involved agencies and interest groups. The implications these findings have for the development and evaluation of this community capacity-building project were examined from the perspective of constructing interventions that address both top-down and bottom-up processes.

Social outcomes in the construction industry : the case of the Western Australia ‘Percent for Art’ policy

Social outcomes, in particular intangible social outcomes, are generally difficult to achieve in the construction industry due to the predominantly episodic, fragmented and heavily regulated nature of construction that presupposes a tendency towards mainstream construction processes and design. The Western Australian ‘Percent for Art’ policy is recognized for stimulating social outcomes, by creating richer and more aesthetically pleasing social environments through the incorporation of artwork into public buildings. A case study of four Percent for Art projects highlights the role of the Artwork Selection Committee in incorporating artwork into construction. A total of 20 semi-structured interviews were conducted with committee members and policy officers. Data analysis involved a combination of pattern coding and matrix categorization, and resulted in the identification of the committee’s three key elements of collaborative communication, democratic decision-making and project champions. The findings suggest these key elements foster the interaction, communication and relationships needed to facilitate feedback, enhance relationships, create cross-functional teams and lower project resistance, which are all necessary to overcome constraints to social outcomes in construction. The findings provide greater insight into the mechanisms for achieving social outcomes and a basis for future discussion about the processes for achieving social outcomes in the construction industry.

State of the art and future challenges for information literacy research

This short paper focuses on strategic issues and important research questions.

Jams, jelly beans and the fruits of passion - art book (26 Pages)

Statement: Jams, Jelly Beans and the Fruits of Passion Let us search, instead, for an epistemology of practice implicit in the artistic, intuitive processes which some practitioners do bring to situations of uncertainty, instability, uniqueness, and value conflict. (Schön 1983, p40) Game On was born out of the idea of creative community; finding, networking, supporting and inspiring the people behind the face of an industry, those in the mist of the machine and those intending to join. We understood this moment to be a pivotal opportunity to nurture a new emerging form of game making, in an era of change, where the old industry models were proving to be unsustainable. As soon as we started putting people into a room under pressure, to make something in 48hrs, a whole pile of evolutionary creative responses emerged. People refashioned their craft in a moment of intense creativity that demanded different ways of working, an adaptive approach to the craft of making games – small – fast – indie. An event like the 48hrs forces participants’ attention onto the process as much as the outcome. As one game industry professional taking part in a challenge for the first time observed: there are three paths in the genesis from idea to finished work: the path that focuses on mechanics; the path that focuses on team structure and roles, and the path that focuses on the idea, the spirit – and the more successful teams put the spirit of the work first and foremost. The spirit drives the adaptation, it becomes improvisation. As Schön says: “Improvisation consists on varying, combining and recombining a set of figures within the schema which bounds and gives coherence to the performance.” (1983, p55). This improvisational approach is all about those making the games: the people and the principles of their creative process. This documentation evidences the intensity of their passion, determination and the shit that they are prepared to put themselves through to achieve their goal – to win a cup full of jellybeans and make a working game in 48hrs. 48hr is a project where, on all levels, analogue meets digital. This concept was further explored through the documentation process. All of these pictures were taken with a 1945 Leica III camera. The use of this classic, film-based camera, gives the images a granularity and depth, this older slower technology exposes the very human moments of digital creativity. ____________________________ Schön, D. A. 1983, The Reflective Practitioner: How Professionals Think in Action, Basic Books, New York

From the margin to the centre : towards an art strategy for the ethnic enclaves in the city

Sunnybank represents a distinctly Australian take on the classic ‘Chinatown’ – or indeed other ethic community enclaves such as ‘little Italy’, ‘little Bombay’, ‘little Athens’ and so on. In the Northern Hemisphere these tended to grow up in the dense working class neighbourhoods of industrial cities, especially in port cities like Liverpool, London, New York and San Francisco. The existing Chinatowns of Sydney and Melbourne, and to some extent Brisbane’s Fortitude Valley, are of this variety. In the late 1970s, with the growth of suburbanisation and the de-industrialisation and consequent dereliction of the ‘inner city’, these ethnic communities were one of the few signs of life in the city. Apart from the daily commute into the CBD, business with the city council or a trip to the big shopping streets these areas were one of the few reasons for visiting city centres stigmatised by urban decay and petty crime.

The art of re-industrialisation in Shanghai

This paper deals with the development of ‘art clusters’ and their relocation in the city of Shanghai. It first looks at the revival of the city’s old inner city industrial area (along banks of Suzhou River) through ‘organic’ or ‘alternative’ artist-led cultural production; second, it describes the impact on these activities of the industrial restructuring of the wider city, reliant on large-scale real estate development, business services and global finance; and finally, outlines the relocation of these arts (and related) cultural industries to dispersed CBD locations as a result of those spatial, industrial and policy changes.

Towards participatory action design research : adapting action research and design science research methods for urban informatics

This paper proposes a new research method, Participatory Action Design Research (PADR), for studies in the Urban Informatics domain. PADR supports Urban Informatics research in developing new technological means (e.g. using mobile and ubiquitous computing) to resolve contemporary issues or support everyday life in urban environments. The paper discusses the nature, aims and inherent methodological needs of Urban Informatics research, and proposes PADR as a method to address these needs. Situated in a socio-technical context, Urban Informatics requires a close dialogue between social and design-oriented fields of research as well as their methods. PADR combines Action Research and Design Science Research, both of which are used in Information Systems, another field with a strong socio-technical emphasis, and further adapts them to the cross-disciplinary needs and research context of Urban Informatics.

Evolving a relationship for cross-cultural participatory innovation

Participatory design prioritises the agency of those who will be most affected by design outcomes. However in cross cultural innovation involving indigenous and non-indigenous communities there is much work to do to develop the cross cultural innovation practices that can best bring together different skills, perspectives and ways of knowing in order to realise the aspirations of indigenous peoples. In this short paper we outline a work-inprogress method based upon relationship development and reciprocity over practical, tangible and culturally appropriate activities. We argue that in a cross-cultural setting the participatory innovation process must be part of a larger relationship building process. The paper centres around a proposed design project with a remote indigenous community on the Groote Eylandt archipelago. A project proposal has evolved from a relationship built through ecological work between scientists and the local community to study native populations of animal species. We describe the context and history and our proposed approach to engaging indigenous knowledge in design.

A child led participatory approach for technology-based intervention

There is significant interest in Human-computer interaction methods that assist in the design of applications for use by children. Many of these approaches draw upon standard HCI methods,such as personas, scenarios, and probes. However, often these techniques require communication and kinds of thinking skills that are designer centred,which prevents children with Autism Spectrum Disorders or other learning and communication disabilities from being able to participate. This study investigates methods that might be used with children with ASD or other learning and communication disabilities to inspire the design of technology based intervention approaches to support their speech and language development. Similar to Iversen and Brodersen, we argue that children with ASD should not be treated as being in some way “cognitively incomplete”. Rather they are experts in their everyday lives and we cannot design future IT without involving them. However, how do we involve them Instead of beginning with HCI methods, we draw upon easy to use technologies and methods used in the therapy professions for child engagement, particularly utilizing the approaches of Hanen (2011) and Greenspan (1998). These approaches emphasize following the child’s lead and ensuring that the child always has a legitimate turn at a detailed level of interaction. In a pilot project, we have studied a child’s interactions with their parents about activities over which they have control – photos that they have taken at school on an iPad. The iPad was simple enough for this child with ASD to use and they enjoyed taking and reviewing photos. We use this small case study as an example of a child-led approach for a child with ASD. We examine interactions from this study in order to assess the possibilities and limitations of the child-led approach for supporting the design of technology based interventions to support speech and language development.

Participatory innovation to develop traditional Indonesian craft industries

This paper presents a participatory project involving the traditional glass bead craft industries in rural Java, Indonesia. Their survival is in danger due to tight business competition among themselves and due to shortcomings in existing business mechanisms. The research explores a departure from traditional government assistance programs which seek to train craftspeople with new kinds of technology based skills. Instead, the project explores alternate business mechanisms, ways for traditional craftspeople to get more power in business mechanisms, and ways to develop new design strategies through a collaborative approach. The ultimate goal is to ensure sustainable livelihoods for traditional craft producers and for the traditional craft industry in general. This research also aims to support the economic strength and competitiveness of these industries indirectly by i. Generating knowledge about developing innovation strategies in the traditional craft industry; ii. Providing an alternative advisory program to support the sustainability of the traditional souvenir craft industry; iii. Providing inputs for designers or any institutions who intend to establish collaborative design learning with craft industries. Understanding the situation carefully,including sensitivities such as culture and tensions among people, building self-confidence and trust among craftspeople as well as involving junior designers are keys in pursuing a participatory project in this case.

Participatory analysis of mobile diaries to inform the design of ridesharing systems

In many “user centred design” methods, participants are used as informants to provide data but they are not involved in further analysis of that data. This paper investigates a participatory analysis approach in order to identify the strengths and weaknesses of involving participants collaboratively in the requirements analysis process. Findings show that participants are able to use information that they themselves have provided to analyse requirements and to draw upon that analysis for design, producing insights and suggestions that might not have been available otherwise to the design team. The contribution of this paper is to demonstrate an example of a participatory analysis process.