Dignity and the Importance of Acknowledgement of Personhood for People With Disability.

Exploring the intricate relationship between individual and collective experiences, this study explores dignity from the perspectives of people with disability. Using an extreme citizen science approach, we engaged people with disability as active partners in gathering data through qualitative surveys and focus groups. Framework Analysis was employed to ensure the validity of findings while privileging the voices of people with lived experience of disability. Dignity was contingent on the acknowledgement of personhood and the delivery of human rights. Our research identified five key aspects to maintain and protect dignity: (1) acknowledging personhood; (2) recognising people with disability as decision-makers of their lives; (3) realising the right to access information; (4) maintaining the right to privacy; and (5) eliminating or minimising barriers to accessibility and inclusion. Undignified experiences that resulted from a lack of acknowledgement negatively affected participants' wellbeing, and healthcare settings were identified as particularly challenging environments for dignity. These findings have significant implications for healthcare systems and services within an international and interdisciplinary context. They emphasise the need for adaptable, flexible services, co-designed with people with lived experience of disability. Addressing organisational constraints, resource limitations, and expectations is paramount to ensuring dignity is maintained through the acknowledgement of personhood and safeguarding of human rights.

Unveiling the dark side of glucose-regulated protein 78 (GRP78) in cancers and other human pathology: a systematic review.

Glucose-Regulated Protein 78 (GRP78) is a chaperone protein that is predominantly expressed in the lumen of the endoplasmic reticulum. GRP78 plays a crucial role in protein folding by assisting in the assembly of misfolded proteins. Under cellular stress conditions, GRP78 can translocate to the cell surface (csGRP78) were it interacts with different ligands to initiate various intracellular pathways. The expression of csGRP78 has been associated with tumor initiation and progression of multiple cancer types. This review provides a comprehensive analysis of the existing evidence on the roles of GRP78 in various types of cancer and other human pathology. Additionally, the review discusses the current understanding of the mechanisms underlying GRP78's involvement in tumorigenesis and cancer advancement. Furthermore, we highlight recent innovative approaches employed in downregulating GRP78 expression in cancers as a potential therapeutic target.

Preferred Self-Administered Questionnaires to Assess Resilience, Optimism, Pain Acceptance, and Social Support in People with Pain: A Modified Delphi Study.

OBJECTIVES: The plethora of self-administered questionnaires to assess positive psychosocial factors complicates questionnaire selection. This study aimed to identify and reach consensus on the most suitable self-administered questionnaires to assess resilience, optimism, pain acceptance and social support in people with pain. DESIGN: A three-round modified Delphi study. PARTICIPANTS: Forty international experts. METHODS: In Round 1, the experts suggested questionnaires deemed appropriate to assess resilience, optimism, pain acceptance and/or social support. In Round 2, experts indicated whether they considered the suggested questionnaires to be suitable (Yes/No/Don't know) to assess these psychosocial factors, taking into consideration content, feasibility, personal experience and the measurement properties which we provided for each questionnaire. Questionnaires that were considered suitable by the majority of experts (≥60%) were retained for Round 3. In Round 3, the suitability of each questionnaire was rated on a 0-10 Likert scale. Consensus was reached if ≥75% of experts rated the questionnaire ≥7. RESULTS: From the 67 questionnaires suggested in Round 1, one questionnaire could be recommended per domain. For resilience: Pain Resilience Scale; for optimism: Revised Version of the Life Orientation Test; for pain acceptance: 8-item and Revised Versions of the Chronic Pain Acceptance Questionnaire; for social support: Emotional Support Item Bank of the PROMIS tool. Consensus for these questionnaires was also reached in a sensitivity analysis which excluded the ratings of experts involved in the development, translation and/or validation of relevant questionnaires. CONCLUSION: We advocate the use of these recommended questionnaires so data can be compared and pooled more easily.

The influence of personal factors, unmet need and service obstacles on the relationship between health service use and outcome after brain injury.

BACKGROUND: This exploratory study aimed to: (i) examine the relationship between health service use and quality of life, psychological wellbeing, global function and participation after discharge from brain injury inpatient rehabilitation, and (ii) determine the influence of personal factors, unmet need for services and service obstacles on the relationship between service use and these outcomes. METHODS: Using a prospective cohort design, 41 adults with acquired brain injury (median age = 46 years; 71% male; 61% severe traumatic injury) were followed for 6-months after discharge from specialist brain injury inpatient rehabilitation. Service use was continuously recorded and obtained through data linkage methods, focusing on the use of: outpatient medical services, outpatient nursing, outpatient allied health; medical acute services; incidents of re-hospitalization; and transitional rehabilitation service use. Outcome questionnaire measures were completed via telephone, at 6-months after discharge, and included: the EuroQol-5D; Depression Anxiety and Stress Scale, Mayo-Portland Adaptability Inventory and Sydney Psychosocial Reintegration Scale. Data were analyzed in a heterogeneous treatment effects framework, using Bayesian Additive Regression Trees. RESULTS: There was weak evidence that transitional rehabilitation service use was associated with better psychological wellbeing scores. The posterior probability of lower depression, anxiety and stress scores was .87, .81 and .86, respectively (average treatment effect). There was also weak evidence that re-hospitalization was associated with worse independent living skills scores. The posterior probability of worse scores was .87. However, most re-hospitalizations were due to unavoidable medical complications. We did not find that place of residence at discharge, marital status, unmet need, or service obstacles affected the relationship between service use and the studied outcomes. CONCLUSIONS: This study may highlight the importance of participation in transitional rehabilitation, in the 6-months after discharge from brain injury rehabilitation. Replication in a larger sample size is required to confirm these findings.

The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research.

INTRODUCTION: Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research. METHODS: Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability. FINDINGS: Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice. CONCLUSION: The framework builds on inclusive research frameworks to a human rights-based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability.

Immediate and Long-Term Implications of the COVID-19 Pandemic for People With Disabilities.

Some people with disabilities may have greater risk of contracting COVID-19 or experiencing worse outcomes if infected. Although COVID-19 is a genuine threat for people with disabilities, they also fear decisions that might limit lifesaving treatment should they contract the virus.During a pandemic, health systems must manage excess demand for treatment, and governments must enact heavy restrictions on their citizens to prevent transmission. Both actions can have a negative impact on people with disabilities.Ironically, the sociotechnical advances prompted by this pandemic could also revolutionize quality of life and participation for people with disabilities. Preparation for future disasters requires careful consideration.

The Effect of Health Service Use, Unmet Need, and Service Obstacles on Quality of Life and Psychological Well-Being in the First Year After Discharge From Spinal Cord Injury Rehabilitation.

OBJECTIVE: This study examined the effects of health and rehabilitation service use, unmet need for services, and service obstacles on health-related quality of life (HR QoL) and psychological well-being after discharge from spinal cord injury (SCI) rehabilitation. DESIGN: Prospective cohort study, with participants followed up at 6 and/or 12 months after discharge from SCI inpatient rehabilitation. SETTING: Community setting. PARTICIPANTS: People with SCI (N=55; mean age 51y; 76.4% men; 61.8% traumatic injury; mean length of stay 137d). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Service Usage Scale, Service Obstacles Scale, the EuroQol-5D, and the Depression Anxiety and Stress Scale short form. Eight predictors of outcome were considered: service use (ie, use of general practitioner, medical specialist, nursing, and allied health, and rehospitalization), unmet need, and service obstacles (ie, finances and transport). Possibly important predictors of each outcome were identified via penalized regression, and a final model was fit using Bayesian hierarchical regression with a Gaussian or zero-inflated Poisson response distribution. RESULTS: Financial obstacles were associated with a poorer HR QoL (ß [95% credible interval]= -0.095 [-0.166 to -0.027]) and higher anxiety (odds ratio, OR [95% credible interval]=1.63 [1.16-2.23]). Rehospitalization was associated with a lower EuroQol visual analog scale (ß= -11.2 [-19.7 to -2.5]) and, interestingly, lower anxiety (OR=1.63 [1.16-2.23]). Use of allied health was associated with higher anxiety (OR=2.48 [1.42-4.44]). CONCLUSION: The varying degrees of financial hardship experienced after injury with complex rehabilitation needs requires investigation, as does the interactive effects of service use, unmet need, and service obstacles on outcomes like QoL and psychological well-being.

Trajectories of Rehabilitation across Complex Environments (TRaCE): design and baseline characteristics for a prospective cohort study on spinal cord injury and acquired brain injury.

PURPOSE: Trajectories of Rehabilitation across Complex Environments (TRaCE), a consented prospective cohort study, addresses a critical need to better understand access to the healthcare system after acute treatment and specialist inpatient rehabilitation for acquired disability. It is expected that this study will produce new knowledge on access to healthcare through the linkage of administrative, survey, and spatial datasets on the one cohort. This paper outlines the study design and baseline characteristics of the cohort. METHODS: The TRaCE cohort is comprised of 165 inpatients who are currently being followed up for 12 months after discharge from specialist rehabilitation for acquired brain injury (ABI) and spinal cord injury (SCI). This project combines a data linkage framework on health service use with a prospective survey on psychosocial wellbeing, geographical information systems to examine spatial accessibility to services, and qualitative interviews with a sub-cohort on experiences of service access. CONCLUSION: Ultimately, TRaCE will have strong translational impact on strategies for more targeted interventions to improve the healthcare system and support individuals with acquired disabilities in the long-term.

An experiential learning theory of high level wellness: Australian salutogenic research.

At the broadest level, salutogenesis refers to an emphasis on the origins of health, as opposed to a predilection with the determinants of disease. Kickbusch urges health promotion professionals to adopt a salutogenic orientation; directing research and practice towards the question of 'what creates health?' This salutogenic study focused on the most pleasant part of the health continuum by asking: (i) what is high level wellness and (ii) how do people attain and maintain this way of being? Semi-structured interviews were conducted with 25 Australian adults who reported a 'high' or 'very high' level of wellness, health and happiness. Participants described what high level wellness meant to them, their wellness journeys, and the things that helped and hindered their wellbeing. This information was coded, compared and crafted into a constructivist grounded theory. Our interpretation of the data suggests that high level wellness is the sense of peace (wellbeing) that comes from knowing, liking and being one's best self. Happy, healthy people seem to attain and maintain this way of being over time, through a series of self-initiated experiential learning cycles. The 'experiential learning theory of high level wellness' links and extends literature on salutogenesis, eudaimonic wellbeing, self-actualization and experiential learning; positioning everyday people as the leaders of their own life-long wellness journeys. It also suggests a new dimension for Antonovsky's salutogenic theory: aspiring, not just adapting. Future research could explore the utility of our approach with a range of populations and professions, progressing towards 'high level wellness for all'.

Bonding and bridging social capital in the recovery of severe mental illness: a synthesis of qualitative research.

BACKGROUND: Social networks are known to have a major influence on the recovery journey of people with severe mental illness (SMI). AIMS: To understand the role of bonding and bridging social capital in the recovery process following SMI and to identify the barriers that prevent social networks from being mobilized. METHOD: A review of major electronic databases for qualitative studies from 2006 to 2015 (41 papers) was undertaken for thematic synthesis. RESULT: The main themes for bonding social capital included: a buffer for isolation and loneliness, variations depending on illness stages, balance in relationships and connections as a source of self-management. Main themes for bridging social capital comprised: feeling powerless and excluded from community/health care, social care beyond the illness, social care barriers and social inclusion through community groups. CONCLUSION: All those involved in the management of SMI must be aware of how social support networks hinder or contribute to recovery. People with SMI need opportunities to form reciprocal relationships and sustain supportive networks that can assist them to endure the challenges presented by SMI.

Patterns and Predictors of Failed and Sustained Return-to-Work in Transport Injury Insurance Claimants.

Purpose To determine the incidence of employed people who try and fail to return-to-work (RTW) following a transport crash. To identify predictors of RTW failure. METHODS: A historical cohort study was conducted in the state of Victoria, Australia. People insured through the state-based compulsory third party transport accident compensation scheme were included. Inclusion criteria included date of crash between 2003 and 2012 (inclusive), age 15-70 years at the time of crash, sustained a non-catastrophic injury and received at least 1 day of income replacement. A matrix was created from an administrative payments dataset that mapped their RTW pattern for each day up to 3 years' post-crash. A gap of 7 days of no payment followed by resumption of a payment was considered a RTW failure and was flagged. These event flags were then entered into a regression analysis to determine the odds of having a failed RTW attempt. RESULTS: 17% of individuals had a RTW fail, with males having 20% lower odds of experiencing RTW failure. Those who were younger, had minor injuries (sprains, strains, contusions, abrasions, non-limb fractures), or were from more advantaged socio-economic group, were less likely to experience a RTW failure. Most likely to experience a RTW failure were individuals with whiplash, dislocations or particularly those admitted to hospital. CONCLUSIONS: Understanding the causes and predictors of failed RTW can help insurers, employers and health systems identify at-risk individuals. This can enable earlier and more targeted support and more effective employment outcomes.

General practitioner management of chronic diseases in adults with severe mental illness: a community intervention trial.

Objective The aim of the present study was to assess the effects of a community intervention aimed at general practitioners (GPs) by comparing Medicare claims data from patients with severe mental illness (SMI) of GPs exposed to the intervention and controls that were not. Methods A comparison was made of primary care consultation and pathology data of people with SMI from intervention and control areas. Negative binomial regression models were used to compare the frequency and length of GP consultations, as well as the number and type of pathology examinations. Results Records of 103 people from intervention area and 98 controls were obtained. Intervention and control areas were not different at baseline in terms of age and claims data, but females had higher consultation rates. After adjusting for gender, people from intervention areas had more GP consultations, especially long consultations (adjusted incidence rate ratio 1.56; 95% confidence interval 1.28-1.91). They also had more pathology screening for chronic diseases, in accordance with implemented guideline recommendations. These benefits persisted after the end of the intervention. Conclusion These findings suggest that the ACTIVATE program aimed at training GPs to screen and better manage chronic diseases in adults with SMI had a positive effect up to 6 months after the trial, with demonstrated desired changes in medical management practices by GPs in the intervention area during that time. What is known about the topic? People with an SMI have higher mortality and poorer physical health than the general population. What does this paper add? The community intervention had a significant and sustained effect, with demonstrated desired changes in screening and medical management by GPs for adults with SMI in the intervention area. What are the implications for practitioners? GPs are ideally placed to assist in the prevention and better management of health conditions, thereby reducing avoidable illness and deaths in vulnerable populations, such as adults with SMI. Ongoing professional training and dissemination of clinical guidelines are critical for raising awareness about the physical and oral health care needs of people with SMI.

Do consumer voices in health-care citizens' juries matter?

BACKGROUND: There is widespread agreement that the public should be engaged in health-care decision making. One method of engagement that is gaining prominence is the citizens' jury, which places citizens at the centre of the deliberative process. However, little is known about how the jury process works in a health-care context. There is even less clarity about how consumer perspectives are heard within citizens' juries and with what consequences. OBJECTIVES: This paper focuses on what is known about the role of consumer voices within health-care citizens' juries, how these voices are heard by jurors and whether and in what ways the inclusion or exclusion of such voices may matter. RESULTS: Consumer voices are not always included in health-care citizens' juries. There is a dearth of research on the conditions under which consumer voices emerge (or not), from which sources and why. As a result, little is known about what stories are voiced or silenced, and how such stories are heard by jurors, with what consequences for jurors, deliberation, decision-makers, policy and practice. DISCUSSION AND CONCLUSION: The potential role of consumer voices in influencing deliberations and recommendations of citizens' juries requires greater attention. Much needed knowledge about the nuances of deliberative processes will contribute to an assessment of the usefulness of citizens' juries as a public engagement mechanism.

Study protocol: developing a decision system for inclusive housing: applying a systematic, mixed-method quasi-experimental design.

BACKGROUND: Identifying the housing preferences of people with complex disabilities is a much needed, but under-developed area of practice and scholarship. Despite the recognition that housing is a social determinant of health and quality of life, there is an absence of empirical methodologies that can practically and systematically involve consumers in this complex service delivery and housing design market. A rigorous process for making effective and consistent development decisions is needed to ensure resources are used effectively and the needs of consumers with complex disability are properly met. METHODS/DESIGN: This 3-year project aims to identify how the public and private housing market in Australia can better respond to the needs of people with complex disabilities whilst simultaneously achieving key corporate objectives. First, using the Customer Relationship Management framework, qualitative (Nominal Group Technique) and quantitative (Discrete Choice Experiment) methods will be used to quantify the housing preferences of consumers and their carers. A systematic mixed-method, quasi-experimental design will then be used to quantify the development priorities of other key stakeholders (e.g., architects, developers, Government housing services etc.) in relation to inclusive housing for people with complex disabilities. Stakeholders randomly assigned to Group 1 (experimental group) will participate in a series of focus groups employing Analytical Hierarchical Process (AHP) methodology. Stakeholders randomly assigned to Group 2 (control group) will participate in focus groups employing existing decision making processes to inclusive housing development (e.g., Risk, Opportunity, Cost, Benefit considerations). Using comparative stakeholder analysis, this research design will enable the AHP methodology (a proposed tool to guide inclusive housing development decisions) to be tested. DISCUSSION: It is anticipated that the findings of this study will enable stakeholders to incorporate consumer housing preferences into commercial decisions. Housing designers and developers will benefit from the creation of a parsimonious set of consumer-led housing preferences by which to make informed investments in future housing and contribute to future housing policy. The research design has not been applied in the Australian research context or elsewhere, and will provide a much needed blueprint for market investment to develop viable, consumer directed inclusive housing options for people with complex disability.

Political Challenges in Complex Place-Based Health Promotion Partnerships: Lessons From an Exploratory Case Study in a Disadvantaged Area of Queensland, Australia.

Settings-based health promotion involving multiple strategies and partners is complex, especially in disadvantaged areas. Partnership development and organizational integration are examined in the literature; however, there is more to learn from the examination of practice stakeholders' experience of intersectoral partnership processes. This case study examines stakeholder experiences of challenges in new partnership work in the context of a culturally diverse and socioeconomically disadvantaged region in Queensland, Australia. Health promotion staff and community representatives participated in interviews and focus groups, and the thematic analysis included observations and documentary analyses. Our findings highlight the retrogressive influence of broader system dynamics, including policy reform and funding changes, upon partnership working. Partnership enablers are disrupted by external political influences and the internal politics (individual and organizational) of health promotion practice. We point to the need for organization level commitment to a consistent agreed vision specifically accounting for place, as a cornerstone of intersectoral health promotion partnership resilience. If organizations from diverse sectors can embed a vision for health that accounts for place, complex health promotion initiatives may be less vulnerable to broader system reforms, and health in all policy approaches more readily sustained.

Using Avoidable Admissions to Measure Quality of Care for Cardiometabolic and Other Physical Comorbidities of Psychiatric Disorders: A Population-Based, Record-Linkage Analysis.

OBJECTIVE: Quality of care for comorbid physical disorders in psychiatric patients can be assessed by the number of avoidable admissions for ambulatory care sensitive (ACS) conditions. These are admissions for physical conditions that, with appropriate primary care, should not require inpatient treatment. Avoidable admissions for ACS conditions feature prominently in Australia's National Health Performance Framework and have been used to assess health care provision for marginalized groups, such as Indigenous patients or those of lower socioeconomic status. They have not been applied to people with mental illness. METHODS: A population-based, record-linkage analysis was used to measure ACS admissions for physical disorder in psychiatric patients of state-based facilities in Queensland, Australia, during 5 years. RESULTS: There were 77 435 males (48.0%) and 83 783 females (52%) (total n = 161 218). Among these, 13 219 psychiatric patients (8.2%) had at least 1 ACS admission, the most common being for diabetes (n = 6086) and angina (n = 2620). Age-standardized rates were double those of the general population. Within the psychiatric group, and after adjusting for confounders, those who had ever been psychiatric inpatients experienced the highest rates of ACS admissions, especially for diabetes. CONCLUSIONS: In common with other marginalized groups, psychiatric patients have increased ACS admissions. Therefore, this measure could be used as an indicator of difficulties in access to appropriate primary care in Canada, given the availability of similar administrative data.

Burden of treatment for chronic illness: a concept analysis and review of the literature.

CONTEXT: Treatment burden, the burden associated with the treatment and management of chronic illness, has not yet been well articulated. OBJECTIVE: Using Rodgers' (1989, Journal of Advanced Nursing, 14, 330-335) method of concept analysis, this review describes the ways in which treatment burden has been conceptualized to define the concept and to develop a framework for understanding its attributes, antecedents and consequences. METHODS: Leading databases were searched electronically between the years 2002 and 2011. To ensure the review focused on actual observations of the concept of interest, articles that did not measure treatment burden (either qualitatively or quantitatively) were excluded. An inductive approach was used to identify themes related to the concept of treatment burden. MAIN RESULTS: Thirty articles, identified from 1557 abstracts, were included in the review. The attributes of treatment burden include burden as a dynamic process, as a multidimensional concept, and comprising of both subjective and objective elements. Prominent predisposing factors (antecedents) include the person's age and gender, their family circumstances, possible comorbidity, high use of medications, characteristics of treatment and their relationship with their health-care provider. The most dominant consequences are poor health and well-being, non-adherence to treatment, ineffective resource use and burden on significant others. Furthermore, many of these consequences can also become antecedents, reflecting the cyclic and dynamic nature of treatment burden. CONCLUSION: The findings underscore the need for researchers and health-care professionals to engage in collaborative discussions and make cooperative efforts to help alleviate treatment burden and tailor treatment regimens to the realities of people's daily lives.

Consensus building to improve the physical health of people with severe mental illness: a qualitative outcome mapping study.

BACKGROUND: The poor physical health of people with severe mental illness (SMI) is often attributed to lifestyle, disease-related medication side effects and disparate provision of healthcare. The complexity and inexact nature of this issue prohibits the identification of a clear and concise causal pathway, which in turn leads to uncertainty and imprecision about the most appropriate action to address the problem. One proposed solution is to integrate care across multiple organisations and sectors through collaborative processes. The objective of this study was to identify collective pathways of action that were consensually developed and which could be initiated by clinicians to improve the physical health of people with severe mental illness. METHODS: Eighteen participants from a service catchment area in Australia were involved in a consensus-building workshop. This resulted in participants identifying and committing to a range of collaborative actions and processes to improve the physical health of people with severe mental illness. Consensus building was combined with an outcome mapping process, which has previously been used to facilitate health system integration. Data from the consensus-building workshop were thematically analysed and used to create an outcome map. RESULTS: Participants identified that accessible, continuous, holistic, consumer-driven, recovery-oriented care was required if improved physical health of people with SMI were to be achieved. However, this all-encompassing care was dependant on a wide-ranging philosophical shift in two areas, namely societal stigma and the dominance of pharmacological approaches to care. Participants believed that this shift was contingent on the attitude and behaviours of healthcare professionals and would require an inclusive, networked approach to care delivery and maximal utilization of existing funding. CONCLUSIONS: Rarely do multiple stakeholders from different sectors within the healthcare system have the opportunity to come together and create a collective vision for improving the health of a specific population in a defined area. We used a consensus building approach to generate solutions, actions and goal statements, which were then used to create a visual map that provided a purpose and signposts for action, thereby maximising the potential for cohesive action across sectors.

The ideal healthcare: priorities of people with chronic conditions and their carers.

BACKGROUND: It is well established that health consumer opinions should be considered in the design, delivery, and evaluation of health services. However, the opinions of people with chronic conditions and their carers and what they actually consider as ideal healthcare is limited. The aim of this study is to investigate the healthcare priorities of consumers with chronic conditions and their carers, if there are differences between these two groups, and if priorities differ depending on geographical location. METHODS: The nominal group technique was used as a method to identify what is currently important to, or valued by, participants. This method was also particularly suited to learning about healthcare problems and generating important solutions, thereby helping to bridge the gap between research and policy. Recruitment was carried out via purposive sampling, with the assistance of community pharmacies, general practices, various health agencies, government and non-government organisations. A total of 11 nominal groups were conducted; five groups consisted predominantly of consumers (n = 33 participants), two groups consisted predominantly of carers (n = 12 participants) and four were mixed groups, i.e. consumers, carers, and both (n = 26 participants). RESULTS: The findings suggested that to create a model of ideal healthcare for people with chronic conditions and their carers, appropriate and timely healthcare access was of paramount importance. Continuity and coordinated care, patient-centred care and affordability were equally the second most important healthcare priorities for all groups. When compared with other groups, access was discussed more frequently among participants residing in the rural area of Mount Isa. Compared to consumers, carers also discussed priorities that were more reminiscent with their caring roles, such as increased access and continuity and coordinated care. CONCLUSIONS: Access to healthcare is the most important priority for people with chronic conditions and their carers. In the event of inappropriate access for certain groups, all other efforts to increase the quality of healthcare delivery, e.g. patient-centred care, may be pointless. However, health professionals alone may be limited in their ability to address the concerns related to healthcare access; structural changes by health policy makers may be needed.

Principles for the development of Aboriginal health interventions: culturally appropriate methods through systemic empathy.

OBJECTIVE: To increase Aboriginal participation in mainstream health services, it is necessary to understand the factors that influence health service usage. This knowledge can contribute to the development of culturally appropriate health services that respect Aboriginal ways of being. DESIGN: We used a community-based participatory approach to examine the reasons for underutilization of health services by Aboriginal Australians. RESULTS: Based on three focus groups and 18 interviews with Aboriginal health professionals, leaders, and community members in rural, regional, and urban settings, we identified five factors that influenced usage, including (1) negative historical experiences, (2) cultural incompetence, (3) inappropriate communication, (4) a collective approach to health, and (5) a more holistic approach to health. CONCLUSION: Given that these factors have shaped negative Aboriginal responses to health interventions, they are likely to be principles by which more appropriate solutions are generated. Although intuitively sensible and well known, these principles remain poorly understood by non-Aboriginal health systems and even less well implemented. We have conceptualized these principles as the foundation of an empathic health system. Without empathy, health systems in Australia, and internationally, will continue to face the challenge of building effective services to improve the state of health for all minority populations.