Making every Australian count: challenges for the National Disability Insurance Scheme (NDIS) and the equal inclusion of homeless Aboriginal and Torres Strait Islander Peoples with neurocognitive disability.

This article highlights the dearth of accurate evidence available to inform the National Disability Insurance Scheme (NDIS) regarding the extent and nature of neurocognitive disability amongst homeless Aboriginal and Torres Strait Islander people. Without accurate prevalence rates of neurocognitive disability, homeless Aboriginal and Torres Strait Islander people are in danger of not being counted by the NDIS and not receiving supports to which they are entitled. Addressing this knowledge gap is challenged by a range of factors, including: (1) the long-term effect of profound intergenerational disenfranchisement of Aboriginal and Torres Strait Islander people; (2) Aboriginal and Torres Strait Islander cultural perspectives around disability; (3) the generally unrecognised and poorly understood nature of neurocognitive disability; (4) the use of research methods that are not culturally safe; (5) research logistics; and (6) the absence of culturally appropriate assessment tools to identify prevalence. It is argued that an accurate evidence base that is informed by culturally safe research methods and assessment tools is needed to accurately guide the Commonwealth government and the National Disability Insurance Agency about the expected level of need for the NDIS. Research within this framework will contribute to the realisation of a truly inclusive NDIS.

Traumatic brain injury amongst indigenous people: a systematic review.

OBJECTIVES: To identify the types of research focusing on Traumatic Brain Injury (TBI) amongst Indigenous people in order to (i) synthesise their findings and (ii) ascertain where research gaps exist. METHODOLOGY: A systematic review using the PRISMA approach was employed. Eight databases were searched for peer-reviewed literature published at any date. FINDINGS: Twenty-six studies met the inclusion criteria and were included in this review. The majority of studies focused on the prevalence or incidence of TBI amongst Indigenous people (n = 15). Twelve of these found Indigenous people had a higher prevalence or incidence of TBI compared to non-Indigenous people. Under-researched areas include (with number of articles identified in brackets): Indigenous level of injury or recovery (n = 2), neuropsychological assessment and TBI (n = 3), Indigenous perspectives of TBI (n = 2), Indigenous intervention for TBI (n = 1), and rehabilitation for TBI (n = 4). CONCLUSION: Published studies demonstrate that Indigenous people have a higher prevalence or incidence of TBI compared to non-Indigenous people. Limited studies explore culturally appropriate rehabilitation and intervention methods and Indigenous understandings of TBI. It is imperative that future research consider the nature and efficacy of culturally appropriate approaches and their contribution towards better outcomes for Indigenous people with TBI, and their families and communities.

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.

Identifying Barriers to Developing Expertise in Hidradenitis Suppurativa.

Background: Hidradenitis suppurativa (HS) is a chronic inflammatory disorder of hair-bearing intertriginous areas with a profound impact on quality of life. Objective: We sought to determine what barriers to treatment exist among both HS experts and non-experts. Methods: An IRB-approved, anonymous, voluntary survey was distributed to dermatologists through the HS Foundation listserv from June to September 2021. Results: Eighty-eight total responses were collected from 49 (55.7%) experts and 39 (44.3%) non-experts. Statistically significant differences were found in the comfort level of treating moderate (p=0.0001) to severe (p<0.0001) disease between experts and non-experts, as well as interest in treating moderate (p=0.0001) and severe (p<0.0001) disease. Multiple barriers to developing expertise were identified (e.g., access to necessary equipment). HS experts also indicated higher levels of knowledge and experience than non-experts with several medical treatments (e.g., IV Ertapenem, p<0.0001). Limitations: We were unable to calculate response rate since listserv survey recipients were encouraged to share the survey through their personal networks. Conclusion: This data demonstrates statistically significant differences in levels of comfort and interest between experts and non-experts in treating moderate to severe disease, as well as differences in medical therapies utilized. Furthermore, multiple barriers to expertise were identified by both experts and non-experts.

Mental and neurological health research priorities setting in developing countries.

INTRODUCTION: A multi-region consultation process designed to generate locally produced regional and global research priorities on mental and neurological health in low- and middle-income countries. METHODS: Between 2003 and 2005, priority setting exercises on MNH research, using the systematic combined approach matrix (CAM) were held in the six regions of the developing world. One regional meeting per region was convened, and a global meeting was organized before and after the regional exercises. RESULTS: During regional meetings, regional agendas were created listing both research priorities and local problems in MNH. During global meetings, a global research agenda was established and four crucial areas of research priorities were identified: awareness and advocacy, enhancement of research capacity, training for service delivery, and development of evidence based policy. CONCLUSIONS: The combined matrix approach enabled the development of regional and global MNH research agendas, derived from bottom up consultations within and between low- and middle-income countries. Collaboration between regions with similar priorities was instituted. Such research agendas are designed to assist policy-makers and donors in the allocation of scarce resources, but they require regular review to reflect changing needs.

Stakeholder concerns about Australia's mental health care system.

There is growing community and professional concern that the Australian mental health care system requires substantial reform. In response to these concerns, a Senate Select Committee on Mental Health has been commissioned to conduct an inquiry into the provision of mental health services. The current study involved a content analysis of 725 submissions received by the Committee, and highlighted significant areas for reform. People with mental illness face difficulties in accessing mental health care, the care they do receive is of varying quality and poorly coordinated, and necessary services from other sectors, such as housing, are lacking. These problems may be exacerbated for particular groups with complex needs or heightened levels of vulnerability. The system requires reorienting towards the consumers and carers it is designed to serve, and needs stronger governance, higher levels of accountability and improved monitoring of quality. These findings are discussed in the context of the recent acknowledgement of mental health as an issue by the Council of Australian Governments (COAG), which has called for an action plan to be prepared for its consideration by June 2006.

Mental and neurological health profile of Ecuador.

We assessed the mental and neurological health (MNH) situation of Ecuador in 2006-8, using the Mental and Neurological Health Country Profile (MNHCP) (Gulbinat et al, 2004; Jenkins, 2004; Jenkins et al, 2004), an instrument which helps to develop evidence-based MNH policy and services (Townsend et al, 2004). An extensive review of the literature was undertaken and consultations and consensus meetings (Schilder et al, 2004) were conducted with key mental and neurological health stakeholders, including consumers, carers and clinicians from the government and non-government sectors.

Mental health policy development: case study of Cambodia.

OBJECTIVE: To identify key issues in the mental health policy development process in Cambodia that will contribute to an increased understanding of how mental health policy gets on the public policy agenda, how it stays there and why policy implementation fails or succeeds. The research was formative because mental health policy analysis is a young and newly emerging discipline. METHOD: A retrospective case study methodology was used to research the development of the draft Cambodian Mental Health Plan 2003-2022. Ten key informants involved in the policy development process were interviewed using a semistructured questionnaire designed to collect qualitative data about the policy formation process, stakeholders and context. RESULTS: The research identified key issues influencing mental health policy development. These are the need to include the Ministry of Health (MoH) in the development of mental health plans; the significance of timing; the usefulness of mental health plans; the impact of the post-conflict context on policy development; and the evolution of stakeholder groups and their need to learn how to debate the merits of mental health reform. CONCLUSIONS: The findings are formative given methodology limitations. However, important insight is provided into the dynamics of the policy development processes that occurred in Cambodia. This allows the generation of important hypotheses for future mental health policy process research in both Cambodia and other post-conflict developing countries.

Prevalence of intellectual disability and comorbid mental illness in an Australian community sample.

OBJECTIVE: The aim of this study was to bring to light the high prevalence of Australians affected by intellectual disability and comorbid serious mental illnesses. Results from a broad scale study are used to explore the reasons for this regularly overlooked phenomenon. METHODS: This study was based on secondary analysis of data collected in the national 'Disability, Ageing and Carers Survey, 1998'. The analysed data consisted of an Australian wide sample of 42 664 individuals living at home or in cared accommodation. Classification of intellectual disability and comorbid psychosis, anxiety and depressive disorder was based on the International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10). RESULTS: The prevalence of intellectual disability in the sampled population was 1.25%. Of these people 1.3% had a psychotic disorder, 8% had a depressive disorder and 14% had an anxiety disorder that had been present for at least 6 months and was of such severity that it too was disabling. CONCLUSIONS: Findings indicate that people with intellectual disability are at high risk of developing comorbid serious mental illness. Dual diagnosis is however, often overlooked due to difficulties associated with establishing a diagnosis of a mental disorder in people with an intellectual disability, a problem which is heightened when the individual's capacity to participate in a clinical assessment is limited.

The mental health policy template: domains and elements for mental health policy formulation.

Mental disorders are a major and rising cause of disease burden in all countries. Even when resources are available, many countries do not have the policy and planning frameworks in place to identify and deliver effective interventions. The World Health Organization (WHO) and the World Bank have emphasized the need for ready access to the basic tools for mental health policy formulation, implementation and sustained development. The Analytical Studies on Mental Health Policy and Service Project, undertaken in 1999-2001 by the International Consortium for Mental Health Services and funded by the Global Forum for Health Research aims to address this need through the development of a template for mental health policy formulation. A mental health policy template has been developed based on an inventory of the key elements of a successful mental health policy. These elements have been validated against a review of international literature, a study of existing mental health policies and the results of extensive consultations with experts in the six WHO regions of the world. The Mental Health Policy Template has been revised and its applicability will be tested in a number of developing countries during 2001-2002. The Mental Health Policy Template and the work of the Consortium for Mental Health Services will be presented and the future role of the template in mental health policy development and reform in developing countries will be discussed.

The mental health country profile: background, design and use of a systematic method of appraisal.

This article describes the construction and use of a systematic structured method of mental health country situation appraisal, in order to help meet the need for conceptual tools to assist planners and policy makers develop and audit policy and implementation strategies. The tool encompasses the key domains of context, needs, resources, provisions and outcomes, and provides a framework for synthesizing key qualitative and quantitative information, flagging up gaps in knowledge, and for reviewing existing policies. It serves as an enabling tool to alert and inform policy makers, professionals and other key stakeholders about important issues which need to be considered in mental health policy development. It provides detailed country specific information in a systematic format, to facilitate global sharing of experiences of mental health reform and strategies between policy makers and other stakeholders. Lastly, it is designed to be a capacity building tool for local stakeholders to enhance situation appraisal, and multisectorial policy development and implementation.

The International Consortium on Mental Health Policy and Services: objectives, design and project implementation.

The concept of the burden of disease, introduced and estimated for a broad range of diseases in the World Bank report of 1993 illustrated that mental and neurological disorders not only entail a higher burden than cancer, but are responsible, in developed and developing countries, for more than 15% of the total burden of all diseases. As a consequence, over the past decade, mental disorders have ranked increasingly highly on the international agenda for health. However, the fact that mental health and nervous system disorders are now high on the international health agenda is by no means a guarantee that the fate of patients suffering from these disorders in developing countries will improve. In most developing countries the treatment gap for mental and neurological disorders is still unacceptably high. To address this problem, an international network of collaborating institutions in low-income countries has been set up. The establishment and the achievements of this network--the International Consortium on Mental Health Policy and Services--are reported. Sixteen institutions in developing countries collaborate (supported by a small number of scientific resource centres in industrialized nations) in projects on applied mental health systems research. Over a two-year period, the network produced the key elements of a national mental health policy; provided tools and methods for assessing a country's current mental health status (context, needs and demands, programmes, services and care and outcomes); established a global network of expertise, i.e., institutions and experts, for use by countries wishing to reform their mental health policy, services and care; and generated guidelines and examples for upgrading mental health policy with due regard to the existing mental health delivery system and demographic, cultural and economic factors.

The appropriateness and use of focus group methodology across international mental health communities.

The ability to interpret collected data across international mental health communities often proves to be difficult. The following paper reports on the use and appropriateness of focus group methodology in helping to clarify issues that could help substantiate data collection and comparison across different cultures and regions. Field tests of the focus group methodology were undertaken in different regions and this paper describes an overview of the final field test in Sofia, Bulgaria. The findings and experiences with utilizing this methodology were incorporated in subsequent data collections.