Enhancing patient engagement in chronic disease self-management support initiatives in Australia : the need for an integrated approach

♦ Although emphasis on the prevention of chronic disease is important, governments in Australia need to balance this with continued assistance to the 77% of Australians reported to have at least one long-term medical condition.

♦ Self-management support is provided by health care and community services to enhance patients’ ability to care for their chronic conditions in a cooperative framework.

♦ In Australia, there is a range of self-management support initiatives that have targeted patients (most notably, chronic disease self-management education programs) and health professionals (financial incentives, education and training).

♦ To date, there has been little coordination or integration of these self-management initiatives to enhance the patient–health professional clinical encounter.

♦ If self-management support is to work, there is a need to better understand the infrastructure, systems and training that are required to engage the key stakeholders — patients, carers, health professionals, and health care organisations.

♦ A coordinated approach is required in implementing these elements within existing and new health service models to enhance uptake and sustainability.

Advances in self-engagement research method : the case of disadvantaged female migrant entrepreneurs in Auckland, New Zealand

The “self-engagement research method” is a set of research procedures, which aims to search latent (hidden) attitudes within a given group of individuals, such as disadvantaged women. This method also examines the research participants practises through an intensive involvement in the process of research. Research on self-regulation has also tended to emphasize having personal control over an event as the primary determinant of whether individuals can effectively monitor and alter their behaviour to attain a desired end state (W. Britt, 1999, 699).

The “self-engagement procedure” originated from fieldwork of social research, especially from the present author’s experiences as a researcher and practitioner on women’s empowerment under the micro-finance programme in Women’s Empowerment Foundation, Auckland and in Grameen Bank Micro-finance programme (Nobel prize winner Professor Mohammed Yunus on poverty reduction through micro-finance).

This technique is based on the oft-cited phenomenon of discrepancies between what research Participants say what they often believe (http://en.wikipedia.org/wiki/Participant_observation). This follows on Gabriel (1991:123-126) namely that participant observation is a useful technique for gaining insight into facts and is also useful for the rural poor or marginal groups, who are unable to communicate their problems. The problem is that since the 1980s, some anthropologists and the social scientists have questioned the degree to which participant observation can give truthful insight into the minds of other people (Geertz, Clifford,1984 & Rosaldo, Renato, 1986).

This paper discusses the difficulties found in using participant observation to discover discrepancies between what participants say and what they really believe. It also discusses self-engagement research procedures which the author has developed through the long-term research experiences with disadvantaged groups of women in Auckland. These procedures discover the discrepancies between what participants say and what is in their mind.

These self-engagement procedures were used from the beginning of the fieldwork to locate research areas and get access to the study settings. It was found there are gaps in this method. For example, there are no systematic processes in which researchers can gain access into the community or be welcomed by research participants. It was also difficult to discover the insight into the facts that cause disempowerment and how micro-finance impacts everyday life on research participants. McCracken (1988 cited in Mertens, 1998:321) argued that researchers collect data directly through observation, but it is not possible to imitate, repeat involvement in the experiences of research participants.

This research draws on and extends the long traditional of participant observation in social research. In field research practises, participant observation was used in different ways for gaining insight into different aspects. A good example is the use and mis-use of the “field journal” in this type of research. The journal typically explained and analysed experiences and understanding of participant observation, in-depth interviews and group discussions on the impact of micro-finance on women’s lives. However, researchers later realised that there were gaps in collected knowledge that needed to be filled. This led to “self-engagement procedures” which developed greater confidence that collected data could truly give insight into patterns of behaviour.

This paper addresses sensitive issues of women’s empowerment under the micro finance programmes and makes a contribution to the literature. The “self-engagement method” detects the “silent facts” of women’s lives. In research conducted amongst disadvantaged women in Auckland, New Zealand and Grameen Bank micro-finance programme in Bangladesh. The method of self-engagement led to better data when participants (both research and subjects) clearly perceived the purpose of the research, when participants have control over providing personal information, and when subjects can build trust with researchers. One overall lesson of this research is that research data and findings are more generalisaable and valid when the participants in the research process understand the relevancy to his/her disadvantaged position and the causes of this, and when participants perceive that it is an opportunity to voice his/her disadvantages and causes.

The “self-engagement research method” involves a variety of behavioural activities. This paper also attempts to discuss in detail, these activities. This paper attempts to discuss the process of the “self-engagement method” in a systematic way. This has been addressed in the research process, in which research participants and researchers become self-engaged to detect the reality of the impact of micro finance to empower the disadvantaged. The stages of self-engagement procedures were developed and followed throughout field research into entrepreneurial behaviour of disadvantaged women in Auckland.

Research on self-regulation has also tended to emphasize having personal control over an event as the primary determinant of whether individuals can effectively monitor and alter their behaviour to attain a desired end state (W. Britt, 1999, 699).

A suitable research method could identify the empowerment/disempowerment of a disadvantaged group of individuals. The self-engagement procedures create a process, in which research participants and researchers become ‘self-engaged’ and gain insight into facts.

Creating community action plans for obesity prevention using the ANGELO (Analysis Grid for Elements Linked to Obesity) framework

Community-based interventions are an important component of obesity prevention efforts. The literature provides little guidance on priority-setting for obesity prevention in communities, especially for socially and culturally diverse populations. This paper reports on the process of developing prioritized, community-participatory action plans for obesity prevention projects in children and adolescents using the ANGELO (Analysis Grid for Elements Linked to Obesity) Framework. We combined stakeholder engagement processes, the ANGELO Framework (scans for environmental barriers, targeted behaviours, gaps in skills and knowledge) and workshops with key stakeholders to create action plans for six diverse obesity prevention projects in Australia (n = 3), New Zealand, Fiji and Tonga from 2002 to 2005. Some sites included sociocultural contextual analyses in the environmental scans. Target groups were under-5-year-olds (Australia), 4–12-year-olds (Australia) and 13–18-year-olds (all four countries). Over 120 potential behavioural, knowledge, skill and environmental elements were identified for prioritization leading into each 2-day workshop. Many elements were common across the diverse cultural communities; however, several unique sociocultural elements emerged in some cultural groups which informed their action plans. Youth were actively engaged in adolescent projects, allowing their needs to be incorporated into the action plans initiating the process of ownership. A common structure for the action plan promoted efficiencies in the process while allowing for community creativity and innovation. The ANGELO is a flexible and efficient way of achieving an agreed plan for obesity prevention with diverse communities. It is responsive to community needs, combines local and international knowledge and creates stakeholder ownership of the action plan.

Community-based environmental education : government and community, economics and environment

This thesis contends that government focus on policy implicitly defines community education as a means of overcoming barriers to government-initiated change, rather than as an input to governmental decision-making. The role of education is thus viewed as instrumentalist rather than as dialectical in nature. I argue that this role has been reinforced and driven by economic rationalism, as a mechanism related to scientific theory and practice. The thesis addresses the role of government in non-institutional community-based environmental education. Of interest is environmental education under the dominance of economic rationalism and as expressed in government-derived policy, in its own right, and as enacted in two government funded animal management projects. The main body of data, then, includes a review of some contemporary environmental policies and two case studies of 'policy in practice'. Chapter One provides an overview of environmentalism as it has emerged as part of the discourse of Western political systems. Recognised as part of this change is a move to environmentalism embued with the rhetoric of economic theory. The manifestation of this change can be seen in an emphasis on management for the natural environment's use as a resource for humans. Education under this arrangement is valued in terms of its ability to support initiatives that are perceived as economically viable and economically advantageous, maintaining centralised control of decision-making and serving the interests of those who profit from this arrangement. Government-derived environmental policies are presented in Chapter Two. They provide evidence of the conjoining of environment with economic rationalism and the adoption of a particular stance which is both utilitarian and instrumentalist. Emerging from this is an understanding of the limitations placed on environmental debates that do not respond to complex understandings of context and instead support and legitimate centralisation of decision-making and control. Chapter Three presents an argument for an historical approach to environmental education research to accommodate contextual dimensions, as well as scientific, economic and technical dimensions, of the subject under study. An historical approach to research, inclusive of biographical, intergenerational and geographical histories, goes some way to providing an understanding of current individual and collective responses to policy enactment within the two study sites. It also responds to the concealing of history which results from the reduction of environmental debates to economic terms. With this in mind, Chapters Four and Five provide two historical case studies of 'policy in practice'. Chapter Four traces the workings of a rabbit control project in the Sutton Grange district of Victoria and Chapter Five provides an account of a mouse plague project in the Wimmera and Mallee regions of Victoria. The Sutton Grange rabbit project is organised and controlled by district landholders while the Wimmera and Mallee mouse project is organised and controlled by representatives from a scientific organisation and a government agency. Considered in juxtaposition, the two case studies enable an analysis of two somewhat different expressions of the 'role of government'. Chapter Six investigates the competing processes of community participation in governmental decision-making and Australia's system of representative democracy, Despite a call for increased community participation, the majority of policies remain dominated by governmental rhetoric and ideology underpinned by a belief in impartiality. The primacy of economics is considered in terms of government and community interaction, with specific reference to the emergence of particular conceptual constructions, such as cost-benefit analysis, that support this dominance. Of specific importance to this thesis is the argument that economic theory is essentially anthropocentric and individualist and, thus, necessarily marginalises particular conceptions of environment that are non-anthropocentric and non-individualistic. Finally, Chapter Six examines two major interrelated tensions; those of central interests and community interests, and economic rationalism and environmentalist. Chapter Seven looks at examples of theories and practices that fall outside the rationality determined by scientistic knowledge. It is clear from the examination of environmental policy within this thesis that the role ascribed to environmental education is instrumentalist. The function of education is often to support, promote and implement policy and its advocated practices. It is also clear from the examination of policy and advocated processes that policy defines community education as a means of manifesting change as determined by policy, rather than as an input to governmental decision-making. The domination of scientific, economic and technocratic processes (and legitimation of processes) allows only for an instrumentalist approach to education from government. What is encouraged by government through the process of change is continuity rather than reform. It promotes change that will not disrupt the governing hegemony. Particular perspectives and practices, such as a critical approach to education, are omitted or considered only within the unquestioned rationale of the dominant worldview. Chapter Seven focuses on the consequence of government attention to policy which implicitly defines community education as a means of overcoming barriers to change, rather than as an input to governmental decision-making. Finally a list of recommendations is put forward as a starting point to reconstruct community-based environmental education. The role considered is one that responds to, and encourages engagement in, debates which expose disparate views, assumptions and positions. Community ideology must be challenged through the public practices of communication and understanding, decision-making, and action. Intervention is not on a level that encourages a preordinate outcome but, rather, what is encouraged is elaborate consideration of disparate views and rational opinions, and the exposure of assumptions and interests behind ideological positions.

Belonging to a Victorian community choir : ageing, music and culture

Australia's ageing population created challenges for maintaining well-being and combating social isolation. Older Australians frequently rely on community arts organizations to enhance quality of life, specifically in health, happiness and community. Arts engagement takes place in many different contexts, from formal to informal and throughout the lifespan of the individual. Culture shapes the way in which we age and cultural identity is celebrated through the arts. This study will explore ageing and cultural diversity within Australian society through an examination of community arts engagement, specifically a community choir in Melbourne, Victoria, Australia. Much previous research concerning music engagement by older people has focused on its therapeutic applications, but there have been less attention given to healthy older people still living in communities. This paper reports on how music engagement can facilitate successful ageing be encouraging a sense of community, enhancing well-being and supporting cultural identity.

Sharing community through singing : the Bosnian Behar Choir in Victoria, Australia

In 2008, the Australian Federal Minister for Ageing identified the importance of promoting social engagement amongst older Australians who frequently rely on community arts organizations to enhance quality of life, specifically in health, happiness and community. The arts are identified as a powerful catalyst in building strong communities that have the potential for connection, caring and social development. Greater active engagement in performing arts by older people is positively related to enhanced individual and community well-being. Our research study, Wellbeing and ageing: community, diversity and the arts (begun in 2008), explores cultural diversity and complexity within older Australian society through an examination of engagement with a community choir. In 2009 data were collected via semi-structured interviews that were analysed using Interpretative Phenomenological Analysis which utilises a phenomenological approach that explores personal experience in the participant’s life-world. Our research study focuses on one community choir, the Bosnian Behar Choir, in Victoria, Australia, as a lens through which to explore active ageing. Three significant issues were identified from this research which will be reported under the themes of well-being, community and cultural diversity. The Bosnian Behar Choir demonstrates how community music making can enhance well-being and positive ageing in contemporary Australia.

Chronic disease self-management programs : perspectives on enablers and barriers to GP and patient engagement

Aims & rationale/Objectives : Chronic disease self-management programs (CDSMP) are increasingly being integrated into the health system to improve the care of people with chronic conditions. Despite activity at both policy and program levels, GPs as the 'gatekeepers' to the health system have generally not been well informed or engaged in this process. This study, in collaboration with 3 Victorian Divisions of General Practice, sought both GP and patient perspectives on enablers and barriers to engagement in self-management programs.
Methods : Interviews were conducted with GPs (n=20) and consumers (n=45) purposefully recruited from metropolitan and rural Victoria, representing key demographics of interest including low socioeconomic areas.
Principal findings : Lack of education/information and uncertainty about the effectiveness of self-management programs were key barriers for both GP and patient engagement. Programs that were sustainable and utilised existing community resources were viewed as enablers to increase uptake. GP and patient preferences for disease specific or generic CDSMP differed.
Discussion : Outcomes from the recent Council of Australian Governments' meeting suggest that self-management will be a centerpiece in forthcoming chronic disease initiatives. International evidence has highlighted the need for GP and patient engagement as critical in ensuring the recruitment of a critical mass of individuals to participate in CDSMP to ensure the sustainability of such initiatives. Insight from this study indicates that GPs and patients are not well informed about self-management, have different preferences to current policy trends and identifies several other barriers which need to be addressed if CDSMP are to be successful.
Implications : Identification of barriers and enablers of GP and patient engagement in self-management is essential in shaping current policy initiatives and delivery of future programs. This is supported by international evidence which indicates strongly that GP engagement in particular is crucial to the success of these programs.
Presentation type : Paper

Experiences of engagement in occupations and assertive outreach services

Aim: The purpose of this study was to describe the experience and meaning of engagement for staff and clients of assertive outreach teams.
Method: Interpretative phenomenological analysis was selected for its flexibility and transparency. Data were collected by semi-structured interviews from a sample of five client and five staff participants (n = 10). The interviews were analysed idiographically, inductively and interrogatively.
Findings: Four themes identified by both staff and client participants emerged: engagement as an interpersonal relationship, engagement in and through time, enabling and disabling factors and engagement in occupation. In addition, clients developed a theme around engagement as a means to self-actualisation. Staff also raised a specific theme around the role of engagement in mental health services.
Conclusion: Staff and clients experienced engagement in broadly similar ways, but with differing emphases. Although all participants described it as both an invisible 'means' and a visible 'end', the staff related engagement only to mental health services whereas the clients experienced it in the context of both mental health services and occupations.
Relevance: This study is relevant to all occupational therapists who work with people experiencing mental health problems.

Community, commitment, and the ten 'commandments' : singing in the coro furlan

Successful ageing involves maintaining well-being and actively engaging with life through the making and sustaining of relationships within community. Membership of community music groups by older people can enhance quality of life, give a sense of fulfillment, offer the possibility for personal growth and create a platform through which they share and celebrate cultural identity and diversity. This study explores community and cultural engagement by members of the Coro Furlan, an Italian male community choir in Melbourne, Australia. This case study is part of a current wider research project, Well-being and ageing: community, diversity and the arts in Victoria (Australia), begun in 2008, which explores how the arts foster well-being in ageing communities. In this case study, members of the Coro Furlan volunteered to participate in a focus group interview in 2009. The transcript was analysed using Interpretive Phenomenological Analysis which seeks to explore the lived world of participants. Analysis of the data identified three broad themes: a sense of community, the maintenance of cultural identity and sustaining a sense of well-being through shared music making. The findings demonstrate the strength of the bonds formed by choir membership with high levels of commitment reflected in their ten ‘Commandments’ that were first documented in Italian in the 1970s. The choir members consider themselves to be the custodians of Friulian choral music in Australia, as well as performers of music from Italy and other countries. Singing in this choir has offered the predominantly older members an opportunity to value, learn, and share music in formal and informal settings. This paper identifies how music engagement can facilitate successful ageing through commitment to community, singing and following the ten ‘Commandments’ of the Coro Furlan.

Client-reported reasons for non-engagement in drug and alcohol treatment

Introduction and Aims.To examine client-reported reasons for missed early appointments at a drug and alcohol treatment service and to compare characteristics of those who missed appointments with those who attended. Design and Methods. Clients who missed a first or second appointment between 1 May and 31 August 2007 at a public community-based outpatient treatment facility were invited to participate in a semistructured telephone interview.This consisted of an open-ended question asking the reason(s) for nonattendance, followed by a questionnaire of items for therapeutic alliance and service satisfaction, perceived impact of substance use and previous treatment experience, mostly rated on Likert scales. Database information on demographic and clinical variables was gathered for all clients who were accepted for treatment within the study time frame. Characteristics of those who missed a first or second appointment (n = 66) were compared with those who attended at least their first two appointments (n = 97). Results. Of clients who missed their appointments, 80.6% provided reasons for nonattendance, which included extraneous factors (50.0%), service shortcomings (29.7%), no further need for service (16.2%) and motivational ambivalence (4.1%). They generally had high ratings of therapeutic alliance and service satisfaction and identified their substance use as having a negative impact on their lives. Clients who missed appointments were more likely to be male, unmarried and have a history of polysubstance use. Discussion and Conclusions. Extraneous issues relating to the client may be a dominant obstacle in early treatment engagement. Efforts to overcome these issues may therefore improve early engagement.

Observing the behaviour and interactions of adults with congenital deafblindness living in community residences

Background Adults with congenital deafblindness (CDB) have received little attention from researchers. In this study we examined the nature of interactions between adults with CDB and the staff who mediate their support, and investigated the reliability of an observation coding system, originally designed for observing adults with severe intellectual disability.

Method The behaviours of 9 adults with CDB, including their interactions with support staff from 2 community residences, were recorded and subsequently coded by 2 observers.

Results Interrater reliability, measured using Cohen's k, was variable across the coding system. Adults with CDB were predominantly observed to be disengaged, with few observations of engagement according to the coding schedule's definition of engagement. Interactions between the residents and support staff were rare.

Conclusion The introduction of interventions designed for staff to promote resident engagement in social interaction is recommended.

Coproduction in practice : participatory action research to develop a model of community aged care

Coproduction has become synonymous with innovative approaches to public service delivery in European Union countries as well as in Australia. Coproduction has the potential to bring together individuals, communities, and organisations in a process to collaboratively develop new models and services which improve public services. Yet, Australian policy makers and practitioners who would like to deploy coproduction within the context of older adult social care can only draw on a handful of papers and reports that could guide implementation. This paper fills this gap by reporting on the implementation of a multi-stakeholder coproduction approach to the development of a consumer directed care model for older people with complex health issues. The paper describes and critically highlights methodological challenges encountered during the 12 month-long participatory action research phase of a larger project involving older people with complex care needs, their carers, and government and non-government stakeholders. The paper outlines key considerations regarding (1) the involvement of older people with complex needs, (2) collaboration with industry partners, (3) engagement of government representatives, and (4) reflects on implementing participatory research projects within a context of outsourcing and interlinked supply chains. While not all challenges encountered could be resolved, the coproduction approach was successful in bringing together a wide range of stakeholders with competing agendas in an iterative process geared to resolve a plethora of concerns raised by older people, carers and services providers. This paper provides an example for others seeking to use coproduction and participatory methods to provide person-centred care services for older people.

Through the looking glass : immersive interfaces for participant engagement in blended e-learning environments

This chapter outlines current research profiling students and educators participating in and constructing immersive interfaces in blended e-learning settings. Multi User Virtual Environments (MUVEs) and real world settings augmented with virtual information can generate problem-solving communities where participants gain greater technical knowledge and skills through meaningful and frequent interaction. MUVEs can also generate technical innovation amongst students from diverse disciplinary backgrounds provided students are encouraged to help each other and learn together. After detailing some false assumptions about computer literacy that can stifle meaningful exploration with new technologies in contemporary education, this chapter documents an exemplar involving extensive collaboration between students from different educational backgrounds with diverse technical competencies. The success of this initiative hinges on the willingness of educators to provide a shared learning experience where technology is used to facilitate increased student communication and offers a site for invention, informed critique, industry participation, and a sense of community.

Growing community : the impact of the Stephanie Alexander kitchen garden program on the social and learning environment in primary schools

This article presents results from a mixed-method evaluation of a structured cooking and gardening program in Australian primary schools, focusing on program impacts on the social and learning environment of the school. In particular, we address the Stephanie Alexander Kitchen Garden Program objective of providing a pleasurable experience that has a positive impact on student engagement, social connections, and confidence within and beyond the school gates. Primary evidence for the research question came from qualitative data collected from students, parents, teachers, volunteers, school principals, and specialist staff through interviews, focus groups, and participant observations. This was supported by analyses of quantitative data on child quality of life, cooperative behaviors, teacher perceptions of the school environment, and school-level educational outcome and absenteeism data. Results showed that some of the program attributes valued most highly by study participants included increased student engagement and confidence, opportunities for experiential and integrated learning, teamwork, building social skills, and connections and links between schools and their communities. In this analysis, quantitative findings failed to support findings from the primary analysis. Limitations as well as benefits of a mixed-methods approach to evaluation of complex community interventions are discussed.

Strengthening work integrated learning (WIL) experiences for rural education students : exploring community based partnerships

This paper investigates three areas of priority for rural teacher education: work integrated learning (WIL); attraction and retention of teachers to rural areas; and the potential challenges and benefits of community based partnerships to address these areas of need. The data on which this paper is based focuses on a Victorian project around six case studies that explored the research and scholarship of teaching graduates to be work ready for the needs of rural and regional communities. The project also aimed to explore how preservice teacher education can develop and better support pre-service teachers (PSTs) through rural and regional community-based WIL experiences.
The project investigated what sort of support PSTs undertaking WIL experiences in rural and regional communities need in order to develop positive attitudes and understandings in relation to working in a rural/regional community. Consideration was also given to how support from the university, school,
supervising teacher and broader local community enhances or detracts from the PST’s experience of WIL in rural and regional areas. In order to explore these issues in this paper the authors will outline some recommendations with regards to ways in which teacher education programs may enhance the experiences of stakeholders involved in rural and regional WIL experiences, including PSTs, supervising teachers, university teacher educators and community members.
The project’s underlying conceptual framework of place, productivity and partnerships will be explained in terms of its overlapping dimensions of community, creativity and capital in order to reconceptualise preservice teacher education in local, rural and regional and global contexts as adaptive community-based work integrated learning within a knowledge economy.
The final discussion will make recommendations on how universities and other identified stakeholders can better facilitate WIL and enhance stakeholder engagement in rural and regional areas in order to equip PSTs
and classroom teachers to work creatively together in productive partnerships to meet the future demands of local rural and global contexts of change in a knowledge economy.