The critical role of community-based micro-grants for disability aids and equipment: results from a needs analysis.

PURPOSE: To investigate the role of philanthropic micro-grants (maximum of $10,000) in the provision of aids and equipment for adults (aged 18-65 years of age) with complex disabilities and examine key trends in aids and equipment requests. METHOD: This study examined, through quantitative and qualitative analysis, aids and equipment requests (n = 371 individual applications as represented by 136 service organisations in three Australian states) received by a not-for-profit (NFP) organisation across five consecutive years of an innovative micro-grants scheme. RESULTS: Findings highlight that living situation (living with family or living independently) significantly influences the nature of requests for respite, aids, equipment and home modifications. Specifically, people with complex disabilities living with their families require greater combined service provision (higher equipment need, respite support, home modifications) than those living independently (equipment need only). Type of disability did not influence request type. Qualitative data further indicated the "last resort" nature of respite requests, particularly for younger applicants (under 45 years of age) indicating critical unmet needs in the community. CONCLUSIONS: Results demonstrate the vital role of NFP organisations and philanthropic funds in supporting daily lifestyle aids and equipment (including respite) that might otherwise not be funded for people with complex disabilities. Although preliminary in its scope and prior to implementation of a National Disability Insurance Scheme (NDIS) in Australia, findings suggest both opportunity and risk to the uptake of community-based micro-grant funding: opportunity for users through the provision of essential aids and lifestyle supports, and risk through over-subscription and devolving of responsibility for critical support resources from public sector. IMPLICATIONS FOR REHABILITATION: The aids and equipment needs of adults under the age of 65 appear to have been underestimated, poorly defined and under-serviced. Service users need more assistance for their carers (i.e. equipment to facilitate safe lifting, urgent breaks from care routines) as well as aids, equipment and modifications to help them to live a more normal life (e.g. going to the beach). Living situation (i.e. independently or with family) significantly influences the nature and extent of aids and equipment requested. Supporting adults up to the age of 65 to live more independently would positively influence carers and family, while at the same time providing opportunities for more targeted personal care supports. Philanthropic and not-for-profit schemes are helping to address these needs through micro-grant schemes for purchases under $10 000, but sustainability is questioned. The introduction of Australia's National Disability Insurance Scheme (NDIS) presents an opportunity to consider the lifestyle needs of service users and carers, and determine who is best placed to address them.

Breaking traditions of practice: workforce challenges in implementing disability service standards within purpose-built accommodation for younger adults.

UNLABELLED: Inadequate community housing and support for adults under 65 years with complex health needs often leads to residential aged care placement. In 2006, Australian government authorities funded a range of supported housing alternatives for younger adults requiring access to 24-hour support including the Integrated Living Model (ILM). The ILM provided purpose-built accommodation for 10-20 people and represented a change in practice from traditional 24/7 nursing care toward a more holistic, individualised approach. AIM: Examine workforce challenges in implementing disability service standards (DSS) within an ILM. METHOD: Thematic Analysis of workforce practices was conducted by coding staff interviews (n = 20) against the prevailing DSS. RESULTS: Emerging challenges identified against each standard were: expectation management; coordination; client expertise; blurred boundaries; role confusion; valued status beyond client; unclear practice boundaries; multilayered communication; reflective practices; and mixed service model responses. CONCLUSION: This ILM setting requires workforce development in rights-based practice, personalisation and effective communication. Key paradigm shifts are also recommended.

Supporting the growth of peer-professional workforces in healthcare settings: an evaluation of a targeted training approach for volunteer leaders of the STEPS Program.

PURPOSE: To examine the effectiveness of a targeted training approach to foster and support a peer-professional workforce in the delivery of a community rehabilitation program for adults with acquired brain injury (ABI) and their families. METHOD: A prospective longitudinal design was used to evaluate the effectiveness of a targeted two-day training forum for peer (n = 25) and professional (n = 15) leaders of the Skills to Enable People and Communities Program. Leaders completed a set of questionnaires (General Self-Efficacy Scale - GSES, Rosenberg Self-Esteem Scale, Volunteer Motivation Inventory - VMI and Community Involvement Scale - CIS) both prior to and immediately following the forum. Data analysis entailed paired sample t-test to explore changes in scores over time, and independent sample t-tests for comparisons between the two participant groups. RESULTS: The results indicated a significant increase in scores over time for the GSES (p = 0.047). Improvements in leaders' volunteer motivations and community involvement were also observed between the two time intervals. The between group comparisons highlighted that the peer leader group scored significantly higher than the professional leader group on the CIS and several domains of the VMI at both time intervals. CONCLUSION: The study provides an enhanced understanding of the utility of innovative workforce solutions for community rehabilitation after ABI; and further highlights the benefits of targeted training approaches to support the development of such workforce configurations.

'It's your problem, not mine': does competence have anything to do with desire and aspiration to self-direct?

The current disability policy paradigm operating across all states in Australia is self-direction. This central movement is closely linked to preparations for a National Disability Insurance Scheme called DisabilityCare. We provide one perspective in relation to self-direction in Australia including assumptions about aspirations to self-direct and the limited research evidence base that is available even though anecdotally self-direction practices have been occurring for many years. We conclude that by developing a funding platform, such as DisabilityCare, that empowers people with a disability to make decisions about their own fundamental needs and the fulfilment of them, it will lead to a society that supports people to access and achieve a 'typical' and desired life.

Spanning boundaries and creating strong patient relationships to coordinate care are strategies used by experienced chronic condition care coordinators.

People with complex chronic conditions frequently need to navigate their own way through and around a fragmented and siloed health care system. Care coordination is a defining principle of primary care and is frequently proposed as a solution to this problem. However, care coordination requires more time and effort than primary care physicians alone have the capacity to deliver. Although registered nurses (RNs) are skilled team members who can be included in the delivery of coordinated patient care, any model of care coordination that involves RNs needs to fit within the existing health care delivery system. In this study, which used qualitative techniques based on grounded theory and included face-to-face interviews and open coding and theoretical sampling until data saturation was achieved, and which was one component of a larger action research study, we aimed to gain an understanding of the difference between usual chronic condition care and the work of chronic condition care coordination. The researchers interviewed general practitioners and RNs from various general practice sites who were actively coordinating care. Four unique processes were found to define care coordination implementation, namely: (1) moving beyond usual practice by spanning boundaries; (2) relationship-based care; (3) agreed roles and routines among relevant parties; and (4) committing to chronic condition care coordination. The findings suggested that existing professional and organisational cultures required negotiation before care coordination could be integrated into existing contexts. The challenge, however, seems to be in acknowledging and overcoming professional practice boundaries that define existing care through reflective practice and shared resourcing.

Experience of place for young adults under 65 years with complex disabilities moving into purpose-built residential care.

The aim of this research was to examine first-person accounts of the significance of place for young adults (aged between 18 and 65 years of age) with complex disabilities moving into purpose-built residential care accommodation. Interviews with residents, family members and staff working at the accommodation site considered the impact of the physical, care and social environment on the experience of place. Five elements of experience were identified, including (a) freedom and self-expression, (b) designed for disability (c) flexible and responsive care environment, (d) establishing relationships and (e) defining spaces. Findings confirmed the need for a 'value added approach' to housing and support for young adults with complex disability. A value added approach extends the importance of place beyond the physical context for people with complex conditions and incorporates essential symbolic and relational concepts of value--being of value (for family members), having value (for residents) and giving value (for staff). The framework of the therapeutic landscape is applied within the context of supported residential care and the factors that promote a healing environment are examined.

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.

Practice-based chronic condition care coordination: challenges and opportunities.

This paper explores issues related to the types of support that practice nurses require to engage in care coordination for people with chronic conditions. A sample of practice nurses and general practitioners participated in a focus group discussion to identify their perspectives on the role of practice nurses as providers of care coordination, the specific tasks that might be conducted and the types of support that might be required. The data were analysed using thematic analysis. The findings suggested there was considerable confusion about care coordination and a lack of conceptual clarity. Nevertheless, nurses were committed to engaging in activities that would promote care coordination. Four main themes emerged that indicated the importance of a developmental and well-supported implementation process. These themes included the need for cultural change within the whole practice, increased capacity to develop trusted and tested partnerships, appropriate role definition and a full understanding of the financial models that could support care coordination. Practice nurses clearly have a role in care coordination, but models of care coordination need to be localised and contextualised within specific GP practices. Cultural change will, in many instances, be critical to the development of localised programs. Broad supportive structures, including ongoing mentorship and administrative assistance (particularly with financial and procedural aspects of care coordination) will be required when implementing programs that enhance roles for practice nurses.

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.

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.

Beyond crisis care in brain injury rehabilitation in australia: a conversation worth having.

OBJECTIVE: The aim of this commentary was to bring together the various significant issues associated with delivering brain injury rehabilitation in Australia. Through observational critique, the authors aimed to identify gaps in practice and opportunities for change. APPROACH: In light of Australia's national health reform process, it is necessary to consider rehabilitation practices and models for brain injury service delivery. There are lessons to be learned within the Australian system, but also opportunities to apply international reform. CONCLUSION: For those within the service delivery system, brain injury rehabilitation can often appear to be a crisis-driven response. Gaps in service provision persist, leaving individuals who have reduced cognitive and emotional capacity to self-navigate an unpredictable health system at a time in their lives when they are least prepared to do so. Deficiencies in the delivery of timely and appropriate psychosocial or behavioral rehabilitation services undoubtedly contribute to the current pressures on the health system created by increased length of stay in neurological and slow-to-recover rehabilitation units, repeat presentations to primary care, and frequent use of community mental health services. IMPLICATION: The experiences of people with acquired brain injury highlights the need for early and targeted interventions that can deal with emerging complexities and support needs, interorganizational approaches, and new accommodation options with a matched service philosophy. Rather than count on good fortune, individual outcomes, and the future of brain injury, rehabilitation ought to depend on deliberate and systemic design.

Predictors of preventable hospitalization in chronic disease: priorities for change.

Research in the area of preventable hospitalization, hospital admissions that could otherwise be avoided, provides little guidance in terms of priority areas for change. This synthesis of multiple electronic databases searched systematically for studies related to preventable hospitalization identifies six priority areas for future action in three broad conceptual areas: person priorities (symptom management and supportive relationships), programme priorities (self-management supports and service delivery), and place priorities (local infrastructure and socio-economic opportunities). Attention to these priorities could help reduce preventable hospitalization while simultaneously improving health access and quality of care.

Geographical information systems: an effective planning and decision-making platform for community health coalitions in Australia.

The development of locally-based healthcare initiatives, such as community health coalitions that focus on capacity building programs and multi-faceted responses to long-term health problems, have become an increasingly important part of the public health landscape. As a result of their complexity and the level of investment, it has become necessary to develop innovative ways to help manage these new healthcare approaches. Geographical Information Systems (GIS) have been suggested as one of the innovative approaches that will allow community health coalitions to better manage and plan their activities. The focus of this paper is to provide a commentary on the use of GIS as a tool for community coalitions and discuss some of the potential benefits and issues surrounding the development of these tools.

Pofessional Practice and Innovation: Geographical Information Systems: An Effective Planning and Decision-Making Platform for Community Health Coalitions in Australia.

The development of locally-based healthcare initiatives, such as community health coalitions that focus on capacity building programs and multi-faceted responses to long-term health problems, have become an increasingly important part of the public health landscape. As a result of their complexity and the level of investment, it has become necessary to develop innovative ways to help manage these new healthcare approaches. Geographical Information Systems (GIS) have been suggested as one of the innovative approaches that will allow community health coalitions to better manage and plan their activities. The focus of this paper is to provide a commentary on the use of GIS as a tool for community coalitions and discuss some of the potential benefits and issues surrounding the development of these tools.

The move towards community-based rehabilitation in industrialised countries: are we equipped for the challenge?

BACKGROUND: Recent challenges to health systems in industrialised countries (e.g., health trends, workforce shortages, geographical dispersion, changing demographics and the growing demand for hospital beds) have prompted a rise in popularity of services loosely labelled community-based rehabilitation (CBR). The rise of CBR is based on the assumption that these models of service delivery have the potential to address some of these challenges by promoting efficient use of community resources. However, due to the way in which CBR has evolved in industrial countries, there is considerable ambiguity surrounding the concept, and even more uncertainty about the methods by which its implementation can be fostered. PURPOSE: To explore the CBR in an industrialised country and the implications of its implementation for the health workforce, health systems and service delivery. METHOD: This article reviews existing literature to explore the concept of CBR as it is applied in industrialised countries. It examines the possible implications of adopting CBR into health systems, including the need for conceptual clarity, a competency frameworks and ongoing professional development. CONCLUSION: This article has shown that for CBR is to become a viable model for the delivery of health services in industrialised countries, a competency framework is needed, together with strong leadership to facilitate the translation of theory into practice. Further, collaboration is required among practitioners, policy makers, unions, consumers, educators and professional associations to support this transformation.

Coordinated care: what does that really mean?

The healthcare system in Australia is struggling to meet the healthcare needs of the ageing population. The pressure on health systems to solve these complex problems can create a sense of urgency to find a panacea in concepts such as coordinated care. A common understanding of coordinated care is often assumed when, in reality, the concept is neither clearly defined nor completely understood. The purpose of this review was to examine and identify the attributes of coordinated care to facilitate a shared definition of this concept within the primary care context. The study was a conceptual review of the literature relating to coordinated care in chronic disease. Two key electronic databases (MEDLINE and CINAHL) were searched using terms generated by a panel of primary healthcare practitioners and researchers. Following the application of inclusion and exclusion criteria, 20 studies were selected from an initial pool of 128. Several key attributes of coordinated care were identified together with a definitional statement. Coordinated care in the primary healthcare setting can be broadly defined as the delivery of systematic, responsive and supportive care to people with complex chronic care needs. It relies heavily on complicated concepts such as partnerships, networking, collaboration, knowledge transfer, person-centred practice and self-management support. The expression of these concepts in the literature was relatively superficial, with little discussion of the actual practices that might be implemented in order to enact them. This paper provides a framework of coordinated care within the primary care setting that can guide future work around implementation and evaluation.

Stress at work: using a process model to assist employers to understand the trajectory.

Successful management of stress at the workplace has become a topic of great interest over the last decade. Motivated by escalating costs, associated workplace injuries and the increasing demands placed on workers in the work context, the need to effectively manage stress within acceptable timeframes and at minimal cost is paramount. According to contemporary models of rehabilitation, the maintenance of a strong and trusting 'bond' between the injured worker and the employer is essential in promoting an efficacious outcome for both parties. In an attempt to provide a greater understanding of the importance of this bond, and to highlight the factors that can impact on the experience of stress at work, a process model is discussed. This model enables the trajectory of stress injuries to be tracked and its implications explored more fully by employers.

Stressors and supports across work and non-work domains: the impact on mental health and the workplace.

The main aim of this research was to investigate the impact of stressors and supports present in both work and non-work domains on occupational health. Using a multi-dimensional survey (SWS-Survey of Occupational Health), the relationships between personal and environmental stress and support was determined for a sample of stress injury claimants (n = 60) and non-claimants (n = 570). A series of regression analyses found significant differences between claimants and non-claimants for both stressors and supports. Poor mental health was best predicted by stress scales for claimants and non-claimants. However, for non-claimants, work support was found to be a significant determinant of outcome. Good mental health was best predicted by support scales for non-claimants, but only by personal support for claimants. Overall, these findings highlighted the influential role of work and personal supports in mitigating the negative impact of stress as well as promoting well-being in the workplace. Specifically, employers must recognise the impact of worker's subjective appraisal of their circumstances and focus on facilitating occupational well-being among their employees.

When guidelines need guidance: considerations and strategies for improving the adoption of chronic disease evidence by general practitioners.

OBJECTIVE: This paper provides a review of key issues affecting the uptake of clinical guidelines by general practitioners (GPs) in Australia and internationally. Attention is given to the barriers that affect guideline uptake, the quality of guidelines and the dissemination of guidelines to GPs in practice settings. METHOD: A comprehensive cross-disciplinary literature review of peer-reviewed journals was conducted between January and April 2008. The literature review was undertaken by three independent researchers from diverse disciplinary backgrounds. The review focused on studies that explored the barriers and issues associated with the use of guidelines in general practice and suggestions for more effective use. RESULTS: Pathways for clinicians to evaluate and use guidelines are still not clear. The majority of contemporary literature promotes linear 'uptake' and 'accessibility' models for clinical guidelines that may not attend to more complex issues associated with GPs' ways of practising on a daily basis. There are also few clear guidelines for GPs on how to 'adapt' guidelines for local and individual patient circumstances. CONCLUSIONS: Peak organizations such as General Practice Queensland in Australia can have a significant role in helping GPs to evaluate and use clinical guidelines. The suggested approach emphasizes the need for such peak bodies to promote respect for practitioner experience, interpretation and patient insight.