Naomi Sunderland

Missing discourses: concepts of joy and happiness in disability

This paper analyses a series of representations of disability and rehabilitation taken from research and policy settings in Australia. The purpose of the analysis is to (a) identify the presence or absence of discourses of happiness and joy in the contexts analysed and (b) to analyse the various treatments and interpretations of happiness and joy that are present. Through this analysis we show that while official professional and public discourses on disability and rehabilitation exhibit predominantly negative discursive patterns and features (i.e. aspirations to achieve ‘normality’ and a negative lexicon, such as disability, coping, rehabilitation, burden, abnormality, etc.) there are many other potentially positive and empowering discursive and narrative patterns and features that remain hidden beneath negatively oriented ways of seeing, being, acting and describing in academic, policy and practice settings. We argue that policy‐makers and academics alike need to be sensitive to the dynamics of discourse when constructing research and developing policy.

Self-managing versus self-management: reinvigorating the socio-political dimensions of self-management

In Australia, self-management predominantly refers to education programmes that, theoretically, equip people with chronic disease with the necessary information and skills to manage their own healthcare, maintain optimal health, and minimize the consequences of their condition. These programmes are designed, and often delivered, by practitioners. Our research has demonstrated that for consumers, self-management involves navigating and responding to a myriad of information sources and experiences, many of which originate in their own lived bodily experiences and personal knowledge. In contrast to this organic and dynamic version of self-managing that is naturally practised by consumers, common practitioner and policy representations of self-management tend to discount consumer agency and overlook the daily ways in which people manage their own body, experiences and health choices. We argue that if the self-management movement is to tackle health inequalities (rather than creating new ones), health professionals and policy-makers must examine the potentially damaging assumptions that are inherent in contemporary self-management discourse.

Beyond the Rhetoric of Participatory Research in Indigenous Communities: Advances in Australia Over the Last Decade

Evidence-based approaches to health care have been difficult to achieve in Indigenous populations across the world, a situation which has contributed to the significant health disparities found in this group. One reason for the inadequacy of evidence-based health interventions is that empirical knowledge tends to be organized around professional disciplines that are grounded in Western ways of knowing. In this article we describe events that have led to more appropriate research methods in Australia, and the resulting changes in the research community. The principles that have guided Australian research policy development might not yet be fully matured, but the improvements we have experienced over the last several decades have gone a long way toward acknowledging the significant disparities that affect Indigenous people and the role of researchers in addressing this issue.

Collaborative capacity building in complex community-based health partnerships: a model for translating knowledge into action.

Partnerships among multiple organizations across a range of sectors that bring together multiple perspectives are a common way of addressing community health and building capacity. To function successfully, partnerships depend on the careful orchestration of a collaborative culture and the facilitation of collective action. Using a systematic method, we developed a synthesis of evidence about collaborative capacity building, integrating this diverse knowledge base into a usable framework. Seventeen published models of collaborative capacity building met the inclusion criteria and were combined to derive a matrix that could guide the actions of those responsible for partnership management. This matrix may make the process of developing partnerships less complicated in future.

Digital Life-Story Narratives as Data for Policy Makers and Practitioners: Thinking Through Methodologies for Large-Scale Multimedia Qualitative Datasets

Digital life stories have been solicited, archived, and Web-cast by organizations and individuals as a way of amplifying marginalized voices in the public domain. Despite the now large collections of digital stories that are available, researchers and policy makers have rarely discussed these stories as qualitative data and powerful evidence for decision making. We analyze the political, ethical and methodological tensions that have limited the use of digital life-story archives to date. In conclusion, we begin to set out future directions for analyzing and applying on-line archives of digital life stories research, drawing on debates within existing research that uses large-scale qualitative datasets.

Exploring the Concept of Moral Distress with Community-Based Researchers: An Australian Study

ABSTRACT Community-based research (CBR) refers to an applied research methodology that is conducted in community settings in partnership between academic and nonacademic participants in research. This article reports on a series of in-depth interviews conducted with 11 Australian CBR researchers between 2008 and 2009. The interviews were designed to explore whether university-employed CBR researchers experience the particular phenomenon of “moral distress,” or feelings of helplessness to act in accordance with ones moral values due to systemic or institutional constraints. Study results found that the CBR researchers experienced unavoidable moral distress at varying levels of intensity related to blurred boundaries between settings, participants, and stakeholders. Based on the outcomes of this study, further research and enhanced professional development and training practices are recommended.

Professional practice and innovation: Chronic disease, geographic location and socioeconomic disadvantage as obstacles to equitable access to e-health

Despite recent public attention to e-health as a solution to rising healthcare costs and an ageing population, there have been relatively few studies examining the geographical pattern of e-health usage. This paper argues for an equitable approach to e-health and attention to the way in which e-health initiatives can produce locational health inequalities, particularly in socioeconomically disadvantaged areas. In this paper, we use a case study to demonstrate geographical variation in Internet accessibility, Internet status and prevalence of chronic diseases within a small district. There are significant disparities in access to health information within socioeconomically disadvantaged areas. The most vulnerable people in these areas are likely to have limited availability of, or access to Internet healthcare resources. They are also more likely to have complex chronic diseases and, therefore, be in greatest need of these resources. This case study demonstrates the importance of an equitable approach to e-health information technologies and telecommunications infrastructure.

Implementing and Sustaining Higher Education Service-Learning Initiatives: Revisiting Young et al.'s Organizational Tactics.

Although the value of service-learning opportunities has long been aligned to student engagement, global citizenship, and employability, the rhetoric can be far removed from the reality of coordinating such activities within higher education. This article stems from arts-based service-learning initiatives with Indigenous communities in Australia. It highlights challenges encountered by the projects and the tactics used to overcome them. These are considered in relation to Young, Shinnar, Ackerman, Carruthers, and Young’s four tactics for starting and sustaining service-learning initiatives. The article explores the realities of service-learning initiatives that exist at the edge of institutional funding and rely on the commitment of key individuals. The research revises Young et al.’s four tactics and adds the fifth tactic of organizational commitment, which emerged as a distinct strategy used to prompt new commitment, enact existing commitment, and extend limited commitment at the organizational level.

1000 Voices: Reflective online multimodal narrative inquiry as a research methodology for disability research:

This article outlines the research approach used in the international 1000 Voices Project. The 1000 Voices project is an interdisciplinary research and public awareness project that uses a customised online multimodal storytelling platform to explore the lives of people with disability internationally. Through the project, researchers and partners have encouraged diverse participants to select the modes of storytelling (e.g. images, text, videos and combinations thereof) that suit them best and to self-define what both ‘disability’ and ‘life story’ mean to them. The online reflective component of the approach encourages participants to organically and reflectively develop story events and revisions over time in ways that suit them and their emerging lives. This article provides a detailed summary of the projects theoretical and methodological development alongside suggestions for future development in social work and qualitative research.

A long way to tipperary? Young people with complex health conditions living in residential aged care: a metaphorical map for understanding the call for change

Purpose. There is ongoing public and private concern regarding the appropriateness of young people with complex health needs residing in nursing homes and the search for alternative living environments. Despite the demand for change, there is only tacit understanding of the key motivations behind this call for change and even less in the way of coherent arguments underlying the need for alternative solutions. The study aimed to explore the assumed truths that have formed around this topic in recent years and to reposition ambitious but ambiguous arguments regarding the need to relocate younger people from aged care facilities. Method. By applying the method of systematic metaphor analysis, the authors conducted a review of social discourse (i.e. media corpus of 904 published articles dated 2001–2009). Results. A conceptual media map was developed to document the process of social change around this topic. Additionally, the narrative described five metaphors that outlined the experience of aged care residential homes for young people with complex health conditions, namely ‘captivity’, ‘commodity’, ‘battlelines’, ‘fragmentation’ and ‘a contemporary life’. These metaphors reflected the fears and hopes held by young people and their families. Conclusions. Results indicate that young people at risk of nursing home placement are confronted with a range of distinct and complex personal dilemmas which ought to be resolved through initiatives purported to offer ‘more appropriate’ residential options. We conclude that principles of good quality care are in danger of becoming misplaced within over-simplified interpretations of the needs of young people with complex conditions. Alignment of disability and rehabilitation policy with residential care practice will allow for more informed decisions about long-term care needs of young people, leading to quality outcomes.