GP awareness, practice, knowledge and confidence: evaluation of the first nation-wide dementia-focused continuing medical education program in Australia.

BACKGROUND: Dementia is under-diagnosed in primary care. Timely diagnosis and care management improve outcomes for patients and caregivers. This research evaluated the effectiveness of a nationwide Continuing Medical Education (CME) program to enhance dementia-related awareness, practice, knowledge and confidence of general practitioners (GPs) in Australia. METHODS: Data were collected from self-report surveys by GPs who participated in an accredited CME program face-to-face or online; program evaluations from GPs; and process evaluations from workshop facilitators. CME participants completed surveys at one or more time-points (pre-, post-program, six to 9 months follow-up) between 2015 and 2017. Paired samples t-test was used to determine difference in mean outcome scores (self-reported change in awareness, knowledge, confidence, practice) between time-points. Multivariable regression analyses were used to investigate associations between respondent characteristics and key variables. Qualitative feedback was analysed thematically. RESULTS: Of 1352 GPs who completed a survey at one or more time-points (pre: 1303; post: 1017; follow-up: 138), mean scores increased between pre-CME and post-program for awareness (Mpost-pre = 0.9, p <  0.0005), practice-related items (Mpost-pre = 1.3, p <  0.0005), knowledge (Mpost-pre = 2.2, p <  0.0005), confidence (Mpost-pre = 2.1, p <  0.0005). Significant increases were seen in all four outcomes for GPs who completed these surveys at both pre- and follow-up time-points. Male participants and those who had practised for five or more years showed greater change in knowledge and confidence. Age, years in practice, and education delivery method significantly predicted post-program knowledge and confidence. Most respondents who completed additional program evaluations (> 90%) rated the training as relevant to their practice. These participants, and facilitators who completed process evaluations, suggested adding more content addressing patient capacity and legal issues, locality-specific specialist and support services, case studies and videos to illustrate concepts. CONCLUSIONS: The sustainability of change in key elements relating to health professionals' dementia awareness, knowledge and confidence indicated that dementia CME programs may contribute to improving capacity to provide timely dementia diagnosis and management in general practice. Low follow-up response rates warrant cautious interpretation of results. Dementia CME should be adopted in other contexts and updated as more research becomes available.

Time to manage: patient strategies for coping with an absence of care coordination and continuity.

This paper examines how people with chronic illnesses respond to absences of continuity and coordination of care. Little work has been done on how the ill person might mitigate flaws in a less than optimal system. Our qualitative research, carried out among 91 participants in Australia, reveals that people with chronic illnesses create strategies to facilitate the management of their care. These strategies included efforts to improve communication between themselves and their health care practitioners; keeping personal up-to-date medication lists; and generating their own specific management plans. While we do not submit that it is patients' responsibility to attend to gaps in the health system, our data suggests that chronically ill people can, in and through such strategies, exert a measure of agency over their own care; making it effectively more continuous and coordinated. Participants crafted strategies according to the particular social and bodily rhythms that their ongoing illnesses had lent to their lives. Our analysis advances the view that the ill body itself is capable of enfolding the health system into the rhythms of illness - rather than the ill body always fitting into the overarching structural tempo. This entails an agent-centric view of time in illness experience. A Virtual Abstract of this paper can be found at: https://youtu.be/UwbxlEJOTx8.

What motivates Australian health service users with chronic illness to engage in self-management behaviour?

CONTEXT: Health policy in Australia emphasizes the role of health service users (HSU) in managing their own care but does not include mechanisms to assist HSUs to do so. OBJECTIVE: To describe motivation towards or away from self-management in a diverse group of older Australians with diabetes, chronic heart failure (CHF) or chronic obstructive pulmonary disease (COPD) and suggest policy interventions to increase patient motivation to manage effectively. DESIGN: Content and thematic analyses of in-depth semi-structured interviews. Participants were asked to describe their experience of having chronic illness, including experiences with health professionals and health services. Secondary analysis was undertaken to expose descriptions of self-management behaviours and their corresponding motivational factors. PARTICIPANTS: Health service users with diabetes, COPD and/or CHF (N=52). RESULTS: Participant descriptions exposed internal and external sources of motivation. Internal motivation was most often framed positively in terms of the desire to optimize health, independence and wellness and negatively in terms of avoiding the loss of those attributes. External motivation commonly arose from interactions with family, carers and health professionals. Different motivators appeared to work simultaneously and interactively in individuals, and some motivators seemed to be both positive and negative drivers. CONCLUSION: Successful management of chronic illness requires recognition that the driving forces behind motivation are interconnected. In particular, the significance of family as an external source of motivation suggests a need for increased investment in the knowledge and skill building of family members who contribute to care.

Out-of-pocket expenditure by Australian seniors with chronic disease: the effect of specific diseases and morbidity clusters.

BACKGROUND: Out of pocket expenditure (OOPE) on healthcare is related to the burden of illness and the number of chronic conditions a patient experiences, but the relationship of these costs to particular conditions and groups of conditions is less studied. This study examines the effect on OOPE of various morbidity groupings, and explores the factors associated with a 'heavy financial burden of OOPE' defined by an expenditure of over 10% of equivalised household income on healthcare. METHODS: Data were collected from 4,574 senior Australians using a stratified sampling procedure by age, rurality and state of residence. Natural clusters of chronic conditions were identified using cluster analysis and clinically relevant clusters based on expert opinion. We undertook logistic regression to model the probability of incurring OOPE, and a heavy financial burden; linear regression to explore the significant factors of OOPE; and two-part models to estimate the marginal effect of factors on OOPE. RESULTS: The mean OOPE in the previous three months was AU$353; and 14% of respondents experienced a heavy financial burden. Medication and medical service expenses were the major costs. Those who experienced cancer, high blood pressure, diabetes or depression were likely to report higher OOPE. Patients with cancer or diabetes were more likely than others to face a heavy burden of OOPE relative to income. Total number of conditions and some specific conditions predict OOPE but neither the clusters nor pairs of conditions were good predictors of OOPE. CONCLUSIONS: Total number of conditions and some specific conditions predict both OOPE and heavy financial burden but particular comorbid groupings are not useful in predicting OOPE. Low-income patients pay a higher proportion of income than the well-off as OOPE for healthcare. Interventions targeting those who are likely to face severe financial burdens due to their health could address some of these differences.

Improving coordination through information continuity: a framework for translational research.

BACKGROUND: There is good evidence that coordination can have beneficial impacts on patient care and outcomes but the mechanisms by which coordination is to be achieved are poorly understood and rarely identified in relevant policies. One approach suggests that continuity of information is a key element but research is yet to provide guidance on how to optimise coordination through improving continuity in healthcare settings. DISCUSSION: In this paper we report on the development of a conceptual framework of information continuity in care coordination. We drew on evidence from systematic reviews of coordination and empirical studies on information use in integrated care models to develop the framework. It identifies the architecture, processes and scope of practices that evidence suggests is required to support information continuity in a population based approach to care coordination. The framework offers value to policy makers and practitioners as a map that identifies the multi-level elements of an integrated system capable of driving better coordination. Testing of the framework in different settings could aid our understanding of information continuity as a mechanism for linking coordination strategies that operate at different levels of the health system and enable synthesis of findings for informing policy and practice.

Time to care? Health of informal older carers and time spent on health related activities: an Australian survey.

BACKGROUND: Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness. METHODS: We conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on "most days" for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11. RESULTS: Most carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health. CONCLUSIONS: Policy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other activities (including their own care) and holds the potential to improve the quality of life as well as the health outcomes of this population.

From coordinated care trials to medicare locals: what difference does changing the policy driver from efficiency to quality make for coordinating care?

The terms coordination and integration refer to a wide range of interventions, from strategies aimed at coordinating clinical care for individuals to organizational and system interventions such as managed care, which contract medical and support services. Ongoing debate about whether financial and organizational integration are needed to achieve clinical integration is evident in policy debates over several decades, from a focus through the 1990s on improving coordination through structural reform and the use of market mechanisms to achieve allocative efficiencies (better overall service mix) to more recent attention on system performance to improve coordination and quality. We examine this shift in Australia and ask how has changing the policy driver affected efforts to achieve coordination? Care planning, fund pooling and purchasing are still important planks in coordination. Evidence suggests that financial strategies can be used to drive improvements for particular patient groups, but these are unlikely to improve outcomes without being linked to clinical strategies that support coordination through multidisciplinary teamwork, IT, disease management guidelines and audit and feedback. Meso level organizational strategies might align the various elements to improve coordination. Changing the policy driver has refocused research and policy over the last two decades from a focus on achieving allocative efficiencies to achieving quality and value for money. Research is yet to develop theoretical approaches that can deal with the implications for assessing effectiveness. Efforts need to identify intervention mechanisms, plausible relationships between these and their measurable outcomes and the components of contexts that support the emergence of intervention attributes.

Preferences, predictions and patient enablement: a preliminary study.

BACKGROUND: The widely used patient enablement instrument (PEI) is sometimes contrasted against measures of patient satisfaction as being a more objective measure of consultation quality, in that it is less likely to be positively influenced by fulfilling pre-existing expectations for specific consultation outcomes (such as prescriptions or referrals). However the relationship between expectation and enablement is underexplored, as is the relationship between 'expectation' understood as a patient preference for outcome, and patient prediction of outcome. The aims of the study are to 1) assess the feasibility of measuring the relationship between expectation fulfilment and patient enablement, and 2) measure the difference (if any) between expectation understood as preference, and expectation understood as prediction. METHODS: A questionnaire study was carried out on 67 patients attending three General Practices in the Australian Capital Territory. Patient preferences and predictions for a range of possible outcomes were recorded prior to the consultation. PEI and the actual outcomes of the consultation were recorded at the conclusion of the consultation. Data analysis compared expectation fulfilment as concordance between the preferred, predicted, and actual outcomes, with the PEI as a dependant variable. RESULTS: No statistically significant relationship was found between either preference-outcome concordance and PEI, or prediction-outcome concordance. Statistically insignificant trends in both cases ran counter to expectations; i.e. with PEI (weakly) positively correlated with greater discordance. The degree of concordance between preferred outcomes and predicted outcomes was less than the concordance between either preferred outcomes and actual outcomes, or predicted outcomes and actual outcomes. CONCLUSIONS: The relationship between expectation fulfilment and enablement remains uncertain, whether expectation is measured as stated preferences for specific outcomes, or the predictions made regarding receiving such outcomes. However the lack of agreement between these two senses of 'patient expectation' suggests that explicitly demarcating these concepts during study design is strongly advisable.

Unlocking information for coordination of care in Australia: a qualitative study of information continuity in four primary health care models.

BACKGROUND: Coordination of care is considered a key component of patient-centered health care systems, but is rarely defined or operationalised in health care policy. Continuity, an aspect of coordination, is the patient's experience of care over time, and is often described in terms of three dimensions: information, relational and management continuity. With the current health policy focus on both the use of information technology and care coordination, this study aimed to 1) explore how information continuity supports coordination and 2) investigate conditions required to support information continuity. METHODS: Four diverse Australian primary health care initiatives were purposively selected for inclusion in the study. Each has improved coordination as an aim or fundamental principle. Each organization was asked to identify practitioners, managers and decision makers who could provide insight into the use of information for care coordination to participate in the study. Using in-depth semi-structured interviews, we explored four questions covering the scope and use of information, the influence of governance, data ownership and confidentiality and the influence of financial incentives and quality improvement on information continuity and coordination. Data were thematically analyzed using NVivo 8. RESULTS: The overall picture that emerged across all four cases was that whilst accessibility and continuity of information underpin effective care, they are not sufficient for coordination of care for complex conditions. Shared information reduced unnecessary repetition and provided health professionals with the opportunity to access records of care from other providers, but participants described their role in coordination in terms of the active involvement of a person in care rather than the passive availability of information. Complex issues regarding data ownership and confidentiality often hampered information sharing. Successful coordination in each case was associated with responsiveness to local rather than system level factors. CONCLUSIONS: The availability of information is not sufficient to ensure continuity for the patient or coordination from the systems perspective. Policy directed at information continuity must give consideration to the broader 'fit' with management and relational continuity and provide a broad base that allows for local responsiveness in order for coordination of care to be achieved.

Consultations with complementary and alternative medicine practitioners by older Australians: results from a national survey.

BACKGROUND: The use of complementary and alternative medicines (CAM) and CAM practitioners is common, most frequently for the management of musculoskeletal conditions. Knowledge is limited about the use of CAM practitioners by older people, and specifically those with other long term or chronic conditions. METHODS: In 2011 we conducted an Australia wide survey targeting older adults aged over 50 years (n = 2540). Participants were asked to identify their chronic conditions, and from which health professionals they had 'received advice or treatment from in the last 3 months', including 'complementary health practitioners, e.g. naturopath'. Descriptive analyses were undertaken using SPSS and STATA software. RESULTS: Overall, 8.8% of respondents reported seeing a CAM practitioner in the past three months, 12.1% of women and 3.9% of men; the vast majority also consulting medical practitioners in the same period. Respondents were more likely to report consulting a CAM practitioner if they had musculoskeletal conditions (osteoporosis, arthritis), pain, or depression/anxiety. Respondents with diabetes, hypertension and asthma were least likely to report consulting a CAM practitioner. Those over 80 reported lower use of CAM practitioners than younger respondents. CAM practitioner use in a general older population was not associated with the number of chronic conditions reported, or with the socio-economic level of residence of the respondent. CONCLUSION: Substantial numbers of older Australians with chronic conditions seek advice from CAM practitioners, particularly those with pain related conditions, but less often with conditions where there are clear treatment guidelines using conventional medicine, such as with diabetes, hypertension and asthma. Given the policy emphasis on better coordination of care for people with chronic conditions, these findings point to the importance of communication and integration of health services and suggest that the concept of the 'treating team' needs a broad interpretation.

Multimorbidity is associated with higher out-of-pocket spending: a study of older Australians with multiple chronic conditions.

Most older Australians have at least one chronic health condition. The management of chronic disease is associated with potentially severe economic consequences for patients and their households, partially due to the financial burden associated with out-of-pocket costs for medical and health-related care. A questionnaire was mailed to a cross-sectional sample of older Australians in mid-2009, with 4574 responding. Multivariate logistic regression models were developed to investigate the relationships between multimorbidity and out-of-pocket spending on medical and health-related expenses, including the factors associated with severe financial stress among older Australians. We found a positive relationship between number of chronic conditions and out-of-pocket spending on health and that people with multiple chronic conditions tend to be on lower incomes. People with five or more chronic conditions spent on average five times as much on their health as those with no diagnosed chronic conditions and each additional chronic disease added 46% to the likelihood of a person facing a severe financial burden due to health costs.

Time spent on health related activities associated with chronic illness: a scoping literature review.

BACKGROUND: The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA. METHODS: Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised. RESULTS: Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved. CONCLUSIONS: While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.

Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study.

BACKGROUND: Aboriginal and Torres Strait Islander people with chronic illness confront multiple challenges that contribute to their poor health outcomes, and to the health disparities that exist in Australian society. This study aimed to identify barriers and facilitators to care and support for Aboriginal and Torres Strait Islander people with chronic illness. METHODS: Face-to-face in-depth interviews were conducted with Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease (n-16) and family carers (n = 3). Interviews were transcribed verbatim and the transcripts were analysed using content analysis. Recurrent themes were identified and these were used to inform the key findings of the study. RESULTS: Participants reported both negative and positive influences that affected their health and well-being. Among the negative influences, they identified poor access to culturally appropriate health services, dislocation from cultural support systems, exposure to racism, poor communication with health care professionals and economic hardship. As a counter to these, participants pointed to cultural and traditional knowledge as well as insights from their own experiences. Participants said that while they often felt overwhelmed and confused by the burden of chronic illness, they drew strength from being part of an Aboriginal community, having regular and ongoing access to primary health care, and being well-connected to a supportive family network. Within this context, elders played an important role in increasing people's awareness of the impact of chronic illness on people and communities. CONCLUSIONS: Our study indicated that non-Indigenous health services struggled to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. To address their complex needs, health services could gain considerably by recognising that Aboriginal and Torres Strait Islander patients have a wealth of cultural knowledge at their disposal. Strategies to ensure that this knowledge is integrated into care and support programs for Aboriginal and Torres Strait Islander people with chronic illness should achieve major improvements.

Coordination of care in Australian mental health policy.

OBJECTIVE: To review Australian mental health initiatives involving coordination of care. METHODS: Commonwealth government websites were systematically searched for mental health policy documents. Database searches were also conducted using the terms 'coordination' or 'integration' and 'mental health' or 'mental illness' and 'Australia'. We assessed the extent to which informational, relational and management continuity have been addressed in three example programs. RESULTS: The lack of definition of coordination at the policy level reduces opportunities for developing actionable and measurable programs. Of the 51 mental health initiatives identified, the three examples studied all demonstrated some use of the dimensions of continuity to facilitate coordination. However, problems with funding, implementation, evaluation and competing agendas between key stakeholders were barriers to improving coordination. CONCLUSIONS: Coordination is possible and can improve both relationships between providers and care provided. However, clear leadership, governance and funding structures are needed to manage the challenges encountered, and evaluation using appropriate outcome measures, structured to assess the elements of continuity, is necessary to detect improvements in coordination.

Private health insurance and quality of life: perspectives of older Australians with multiple chronic conditions.

A qualitative study was conducted to explore in-depth issues relating to the health costs of chronic illness as identified in a previous study. A key theme that emerged from interviews carried out was the benefits and challenges of private health insurance (PHI) membership, and choices older Australians with multimorbidity make in accessing health services, with and without PHI. This is the focus of this paper. Semistructured interviews were conducted with 40 older people with multiple chronic conditions. Data were analysed using content analysis. Key motivators for maintaining PHI included: fear of an inability to access timely health care; the opportunity to exercise choice in service provider; a belief of being 'better off' both medically and financially, which was often ill-founded; and the core values of self reliance and independence. Most described financial pressure caused by rising PHI premiums as well as other out-of-pocket health related expenses. Many older people who can ill afford PHI still struggle to maintain it, potentially at the cost of their quality of life, based on beliefs about costs of health care that they have never properly assessed. The findings highlight the degree to which people whose resources are constrained are prepared to go to maintain access to private hospital care. Attention should be given to assisting older people to make informed and valid choices of health insurance derived from the facts, rather than being based on fear and assumptions.

Chronic disease management items in general practice: a population-based study of variation in claims by claimant characteristics.

OBJECTIVE: To describe how Medical Benefits Schedule (MBS) chronic disease (CD) item claims vary by sociodemographic and health characteristics in people with heart disease, asthma or diabetes. DESIGN, SETTING AND PARTICIPANTS: A cross-sectional analysis of linked unit-level MBS and survey data from the first 102,934 participants enrolled in the 45 and Up Study, a large-scale cohort study in New South Wales, who completed the baseline survey between January 2006 and July 2008. MAIN OUTCOME MEASURE: Claim for any general practitioner CD item within 18 months before enrolment, ascertained from MBS records. RESULTS: The proportion of individuals making claims for MBS CD items was 18.5% for asthma, 22.3% for heart disease, and 44.9% for diabetes. Associations between participant characteristics and a claim for a CD item showed similar patterns across the three diseases. For heart disease and asthma, people most likely to claim a CD item were women, older, of low income and education levels, with multiple chronic conditions, fair or poor self-rated health, obesity and low physical activity levels. The pattern of claims was slightly different for participants with diabetes in that there was no significant association with number of chronic conditions, smoking or physical activity. CONCLUSIONS: Many individuals with self-reported CD do not claim CD items. People with diabetes and individuals with greatest need based on health, socioeconomic and lifestyle risk factors are the most likely to claim CD items.

Health professionals, patients and chronic illness policy: a qualitative study.

BACKGROUND AND OBJECTIVE: This study investigates health professionals' reactions to patients' perceptions of health issues - a little-researched topic vital to the reform of the care of chronic illness. METHODS: Focus groups were undertaken with doctors, nurses, allied health staff and pharmacists (n = 88) in two Australian urban regions. The focus groups explored responses to patient experiences of chronic illness (COPD, Diabetes, CHF) obtained in an earlier qualitative study. Content analysis was undertaken of the transcripts assisted by NVivo7 software. RESULTS: Health professionals and patients agreed on general themes: that competing demands in self-management, financial pressure and co-morbidity were problems for people with chronic illness. However where patients and carers focused on their personal challenges, health professionals often saw the patient experience as a series of failures relating to compliance or service fragmentation. Some saw this as a result of individual shortcomings. Most identified structural and attitudinal issues. All saw the prime solution as additional resources for their own activities. Fee for service providers (mainly doctors) sought increased remuneration; salaried professionals (mainly nurses and allied health professionals) sought to increase capacity within their professional group. CONCLUSIONS: Professionals focus on their own resources and the behaviour of other professionals to improve management of chronic illness. They did not factor information from patient experience into their views about systems improvement. This inability to identify solutions beyond their professional sphere highlights the limitations of an over-reliance on the perspectives of health professionals. The views of patients and carers must find a stronger voice in health policy.

With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study.

BACKGROUND: Understanding people's social lived experiences of chronic illness is fundamental to improving health service delivery and health outcomes, particularly in relation to self-management activity. In explorations of social lived experiences this paper uncovers the ways in which Aboriginal and Torres Strait Islander people with chronic illness experience informal unsolicited support from peers and family members. METHODS: Nineteen Aboriginal and Torres Islander participants were interviewed in the Serious and Continuing Illness Policy and Practice Study (SCIPPS). Participants were people with Type 2 diabetes (N = 17), chronic obstructive pulmonary disease (N = 3) and/or chronic heart failure (N = 11) and family carers (N = 3). Participants were asked to describe their experience of having or caring for someone with chronic illness. Content and thematic analysis of in-depth semi-structured interviews was undertaken, assisted by QSR Nvivo8 software. RESULTS: Participants reported receiving several forms of unsolicited support, including encouragement, practical suggestions for managing, nagging, growling, and surveillance. Additionally, participants had engaged in 'yarning', creating a 'yarn' space, the function of which was distinguished as another important form of unsolicited support. The implications of recognising these various support forms are discussed in relation to responses to unsolicited support as well as the needs of family carers in providing effective informal support. CONCLUSIONS: Certain locations of responsibility are anxiety producing. Family carers must be supported in appropriate education so that they can provide both solicited and unsolicited support in effective ways. Such educational support would have the added benefit of helping to reduce carer anxieties about caring roles and responsibilities. Mainstream health services would benefit from fostering environments that encourage informal interactions that facilitate learning and support in a relaxed atmosphere.

National Health and Hospital Reform Commission final report and patient-centred suggestions for reform.

The final report of the National Health and Hospital Reform Commission (NHHRC) called for a strengthened consumer voice and empowerment. This has salience for the development of health policy concerning chronic illnesses. This paper compares the recommendations for chronic illness care made in the NHHRC final report with suggestions made by people with chronic illness and family carers of people with chronic illness in a recent Australian study. Sixty-six participants were interviewed in a qualitative research project of the Serious and Continuing Illness Policy and Practice Study (SCIPPS). Participants were people with type II diabetes mellitus, chronic obstructive pulmonary disease or chronic heart failure. Family carers were also interviewed. Content analysis was undertaken and participants' recommendations for improving care were compared with those proposed in the NHHRC final report. Many suggestions from the participants of the SCIPPS qualitative research project appeared in the NHHRC final report, including the need to improve care coordination, health literacy and the experience of Indigenous Australians. The research project also identified important issues of family carers, immigrants and people with multiple illnesses, which were not addressed in the NHHRC final report. More specific attention is needed in health reform to improve the experience of family carers, Indigenous peoples, immigrants to Australia and people with multiple illnesses. To align more closely with their needs, health reform must be explicitly informed by the voices of people with chronic illness and their family carers. The NHHRC recommendations must be supplemented with proposals that address the needs of these people for support and the problems associated with poor care coordination.

A local study of costs for private allied health in Australian primary health care: variability and policy implications.

Multidisciplinary approaches to primary health care improve outcomes for individuals living with chronic conditions. However, emerging evidence suggests access to allied health professionals in Australia is problematic. This paper reports findings of a telephone survey of allied health professionals' billing practices in one urban area. The survey was undertaken as a quality improvement project in response to the affordability queries raised by patients and carers in the clinical setting. The aim was to determine financial cost of access to allied health professionals in one urban primary health care setting. Participant practices included: physiotherapy (n=21), podiatry (n=8) and dietitians (n=3). Fees were variable, with cost of the initial (assessment) appointment higher than subsequent (follow-up) appointments in 92% of practices. The average out of pocket expenses for assessment and three follow-up appointments ranged from $258 to $302. When available, the Medicare rebate reduced this to $58-106. Bulk billing was not offered. Variable costs, minimal concessions and absence of bulk billing in this confined geographical area creates a cost barrier to access for patients from lower socioeconomic groups and has implications for access to multidisciplinary care in Australian primary health care.