The impact of humanitarian emergencies on adolescent boys: Findings from the Rohingya refugee crisis.

Adolescent boys (age 9-19) are impacted differently by humanitarian emergencies. However, academic research on adolescent health and child protection has tended to focus on the direct impacts of an emergency rather than indirect impacts that may arise after a crisis. We sought to identify child protection concerns affecting adolescent boys in emergency settings and boys who are more vulnerable to harm through a case study of the humanitarian response to the 2017 Rohingya refugee crisis. We collected data in the Rohingya refugee crisis in Cox's Bazar, Bangladesh between 2018-2019. This included six months of participant observation, 23 semi-structured interviews and 12 informal ethnographic interviews with humanitarian staff working in the crisis, and 10 focus group discussions with a total of 52 child protection caseworkers from four child protection organisations. Our results showed that adolescent Rohingya boys were exposed to numerous protection concerns, including child labour, drug trafficking, substance abuse, family violence, and neglect. We classified these into three main typologies: community-related violence, income-related violence, and life-stage vulnerabilities. We found that adolescent boys who were unaccompanied or separated from their caregivers, adolescent boys who were members of vulnerable households, and adolescent boys with a disability were at more risk of harm. Our findings indicate that adolescent boys are exposed to an array of impactful child protection concerns in humanitarian emergencies and that this has implications for the delivery of public health and child protection interventions. We believe that humanitarian actors should improve recognition of the complexity of adolescent boys' lives and their exposure to gender and age-based harm as a critical matter for addressing adolescent health equity.

The health of people attending residential treatment for alcohol and other drug use: Prevalence of and risks for major lifestyle diseases.

INTRODUCTION: Cardiovascular disease and cancers are the leading cause of mortality amongst people accessing treatment for alcohol and other drug use. The current study aimed to examine risk factors for chronic disease amongst people attending residential alcohol and other drug treatment services. METHODS: Participants (N = 325) were attending residential alcohol and other drug treatment services across Australia. Diabetes and cardiovascular disease risk scores were calculated using established risk estimation algorithms. Differences in existing health conditions, risk factors for chronic diseases and risk algorithms were calculated for males and females. RESULTS: In addition to alcohol and other drug use (including tobacco use), 95% of the sample had at least one other risk factor for chronic disease. Of participants not already diagnosed, 36% were at a high risk of developing type 2 diabetes and 11% had a high risk of developing cardiovascular disease. The heart age of participants was 11 years older than actual age (Mage = 40.63, Mheart age = 52.41). Males had a higher cardiovascular disease risk than females. DISCUSSION AND CONCLUSIONS: A large proportion of people accessing residential alcohol and other drug treatment were at risk of chronic disease. Future research is needed that uses objective indicators of physical health. Such research will help to develop our understanding of prevention and intervention initiatives that could be adopted by treatment providers to improve the physical health of their consumers.

The ethical dimensions of everyday alcohol and other drug work: An empirical ethics investigation.

INTRODUCTION: The complex and contentious nature of alcohol and other drug (AOD) clinical work affords the likelihood of significant ethical dimensions. However, little attention has been paid to clinicians' perspectives of ethics in their practice within AOD settings. This potentially neglects an important aspect of AOD clinical work. METHODS: We used an insider empirical ethics methodology, where the first author (DS) concurrently worked as an AOD clinician in the research setting. Participants were 30 experienced AOD clinicians, working within a large specialist AOD service in Victoria, Australia. We used three qualitative data collection methods: moral conversation, involving semi-structured interviews; moral participation, involving the first author reflecting on his own ethical practices; and participant-observation, involving observation of clinical meetings. We used Applied Thematic Analysis to analyse the data. RESULTS: Although participants rarely used explicitly ethical language to describe their work, they described four ethical goals: helping clients to access AOD care and treatment; facilitating change in clients' lives; challenging stigma; and keeping people safe. We argue that these clinical goals should also be conceptualised as ethical goals. DISCUSSION AND CONCLUSIONS: Ethics is an integral component of everyday AOD work. Our findings had some overlap with established ethical principles. Participants demonstrated expertise in engaging with ethical dimensions, without using ethical language. Given the limited attention paid to ethics in AOD clinical settings, increasing the focus on ethics in everyday clinical practice is an important contribution to future AOD clinical work. Its absence negates important aspects of care for clients.

Changes in mental health, wellbeing and personality following ayahuasca consumption: Results of a naturalistic longitudinal study.

Background: Naturalistic and placebo-controlled studies suggest ayahuasca, a potent psychedelic beverage originating from Indigenous Amazonian tradition, may improve mental health, alter personality structure, and reduce alcohol and drug intake. To better understand ayahuasca's therapeutic potential and to identify factors that influence therapeutic efficacy, we conducted a naturalistic, longitudinal study of facilitated ayahuasca consumption in naïve participants using a comprehensive battery of self-report questionnaires. Materials and Methods: Ayahuasca naive individuals registering for ayahuasca ceremonies were asked to complete a range of validated questionnaires assessing mental health, alcohol/cannabis use, relationships, personality, and connection to self and spirituality, prior to and 1 month after attending an ayahuasca ceremony. Data for two mental health measures (the DASS-21 and PANAS) and acute subjective effects via the MEQ-30 were also assessed 7 days post-ceremony. Repeated measures ANOVA were used to examine pre-to-post changes, and Pearson correlations explored predictors of improvement in outcomes. Results: Fifty-three attendees (32 women, 21 men) completed pre and post ayahuasca assessments with 55.6% of the sample reporting a complete mystical experience based on the MEQ-30. One-month post-ayahuasca, significant reductions were identified in depression, anxiety, stress, alcohol and cannabis use, body dissociation, accepting external influence, self-alienation, impulsivity, and negative affect/emotionality. Significant increases were identified in positive mood, self-efficacy, authentic living, extraversion, agreeableness, open-mindedness, spirituality, and satisfaction with relationships. While facets of the mystical experience held little predictive validity on outcome measures, baseline traits, particularly high negative emotionality and body dissociation, and low sense of self-efficacy, robustly predicted improvements in mental health and alcohol/cannabis use, and alterations in personality structure which are linked to better mental health. Discussion: This study suggests facilitated ayahuasca consumption in naïve participants may precipitate wide-ranging improvements in mental health, relationships, personality structure, and alcohol use. Associations between baseline traits and therapeutic improvements mark an important first step toward personalized, precision-based medicine and warrant randomized controlled trials to confirm and elaborate on these findings. Contribution Statement: Longitudinal, observational studies and randomized clinical control trials suggest ayahuasca may exert therapeutic effects on mental health and alcohol/cannabis use, and alter personality structure. However, it is unclear if improvements are diagnosis-specific and factors that predict therapeutic gains have yet to be extensively elucidated. This longitudinal, observational study examined the effects of facilitated ayahuasca consumption in naive participants on mental health, alcohol and substance use/abuse, personality traits, relationships, and connection to self and spirituality. We found wide-ranging improvements 1-month post-treatment across these domains, and identified baseline traits which predict pre-to-post changes on primary outcome measures. Improvements were not diagnostic-specific, suggesting ayahuasca may be generally efficacious. Personality traits, body dissociation, and self-efficacy were strong predictors of therapeutic improvements, marking an important first step toward personalized, precision-based medicine. Randomized controlled trials are warranted to confirm and elaborate on these findings.

Perspectives, understandings of dementia and lived experiences from Australian Aboriginal people in Western Australia.

OBJECTIVE: We explored understandings about dementia and lived experiences from carers among community-dwelling Aboriginal people in Western Australia (WA). METHODS: In partnership with Aboriginal medical services in WA, we conducted semi-structured interviews with Aboriginal people in Perth and Bunbury. All interviews were transcribed verbatim and coded thematically. RESULTS: We conducted 39 interviews. Dementia was associated with 'losing your memory', a 'change in behaviour' and unhealthy lifestyles. Increasing awareness about dementia in the community was noted particularly to enable people to recognise the early signs, feel safe to ask for help and know how to best support families. Families were primarily responsible for caring for people with dementia and were finding it difficult to manage. They expressed negative experiences with currently available aged care facilities. CONCLUSIONS: Increased awareness of dementia in the community through public health messaging and by health professionals and culturally secure services focussing on dementia care is required.

The internet as non-biomedical milieu: Production of alternative health techno-social spaces and the persistence of marginalised medical practices.

This paper describes how spatial understandings of the internet (i.e. the internet is a 'space') enable the persistence of marginalised medical practices. By tracing different accounts of the internet as space among practitioners and followers of dien chan - an emergent Vietnamese unregulated therapeutic method - we show how the logic of space circumscribes an alternative techno-social site for marginalised medical practices, transforms the private experience of being alone with technology into being-in-space, spiritualises the internet as a conduit of healing power, and mediates transnational health mobility among the Vietnamese diaspora. Drawing on interviews and ethnographic participation in Vietnam and the US, we demonstrate how the internet can be understood as non-biomedical milieu - a field of determination that conjoins heterogenous interventions on health-related eventualities outside of structured and institutionalised biomedical practices. This in vivo conceptualisation of the internet as space offers a point of convergence against the bifurcation of information as abstract and technology as concrete. A spatial conceptualisation highlights the embeddedness of health knowledge on the internet and shows how techno-social interrelations produce different spaces of multiplicity, which constitute a favourable milieu for medical practices outside of the biomedical institution to persist.

"Is Life Worth Living?": The Role of Masculinity in the Way Men Aged Over 80 Talk About Living, Dying, and Suicide.

Men aged 85 years and over have the highest rate of suicide of any age or gender group in Australia. However, little is known about their trajectory toward suicide. The objective of this study was to understand the role of masculine norms and other life factors in the suicidality of older men. Thirty-three men aged 80 years or more took part in a semistructured focus group or interview, and/or completed a survey. Participants were asked about the issues facing older men, well-being and aging, physical health challenges, social support, mental health and help-seeking, and suicide and suicide prevention. Five themes emerged: "finding out we're not invincible," "active and tough," "strong silent types," "decision makers," and "right to die." Participants spoke about masculine norms that had influenced their lives as providers and decision makers, and now influenced how they coped with aging and their journey toward death. For some participants, suicide was seen to be a rational alternative to dependence in their final years. Suicide prevention should adopt a gendered approach and be cognizant of the influence of gender roles and masculinity in older men's lives. Further research and prevention efforts should be mindful of the impact of masculine norms of self-reliance and control on an older man's decision to end his life. Suicide prevention efforts should work to reduce stigma around the challenges of aging, maximize opportunities for control, facilitate social connection, and improve residential aged care.

Inequalities in the Age of Universal Health Coverage: Young Chileans with Diabetes Negotiating for Their Right to Health.

While universal health coverage (UHC) has been praised as a powerful means to reduce inequalities and improve access to health globally, little has been said about how patients experience and understand its implementation locally. In this article, we explore the experiences of young Chileans with type 1 diabetes when seeking care in Santiago, within Chile's UHC program, which sought to improve people's access to health care. We argue that the implementation of UHC, within a structurally fragmented health system, did not lead to the promised equitable health care delivery. Although UHC aimed to equitably provide universal care, locally it materialized in heterogeneous configurations forcing individuals into positions of precarity and generating new inequalities. Furthermore, for the young people in the study, UHC intersected with their health insurance and socioeconomic status, impacting on the health care they could access, consequently making diabetes care and management a difficult challenge.

Can public health policies on alcohol and tobacco reduce a cancer epidemic? Australia's experience.

BACKGROUND: Although long-term alcohol and tobacco use have widely been recognised as important risk factors for cancer, the impacts of alcohol and tobacco health policies on cancer mortality have not been examined in previous studies. This study aims to estimate the association of key alcohol and tobacco policy or events in Australia with changes in overall and five specific types of cancer mortality between the 1950s and 2013. METHODS: Annual population-based time-series data between 1911 and 2013 on per capita alcohol and tobacco consumption and head and neck (lip, oral cavity, pharynx, larynx and oesophagus), lung, breast, colorectum and anus, liver and total cancer mortality data from the 1950s to 2013 were collected from the Australian Bureau of Statistics and Cancer Council Victoria, the WHO Cancer Mortality Database and the Australian Institute of Health and Welfare. The policies with significant relations to changes in alcohol and tobacco consumption were identified in an initial model. Intervention dummies with estimated lags were then developed based on these key alcohol and tobacco policies and events and inserted into time-series models to estimate the relation of the particular policy changes with cancer mortality. RESULTS: Liquor licence liberalisation in the 1960s was significantly associated with increases in the level of population drinking and thereafter of male cancer mortality. The introduction of random breath testing programs in Australia after 1976 was associated with a reduction in population drinking and thereafter in cancer mortality for both men and women. Meanwhile, the release of UK and US public health reports on tobacco in 1962 and 1964 and the ban on cigarette ads on TV and radio in 1976 were found to have been associated with a reduction in Australian tobacco consumption and thereafter a reduction in mortality from all cancer types except liver cancer. Policy changes on alcohol and tobacco during the 1960s-1980s were associated with greater changes for men than for women, particularly for head and neck, lung and colorectum cancer sites. CONCLUSION: This study provides evidence that some changes to public health policies in Australia in the twentieth century were related to the changes in the population consumption of alcohol and tobacco, and in subsequent mortality from various cancers over the following 20 years.

Young Thai People's Exposure to Alcohol Portrayals in Society and the Media: A Qualitative Study for Policy Implications.

BACKGROUND: Although previous quantitative studies have documented the association between exposure to alcohol portrayals and drinking attitudes in Western countries, few qualitative studies have explored this matter in Thailand. A better understanding of the association in young Thais is required for a more efficient alcohol policy development. This study aims to explore the information young Thais have learnt from exposure to alcohol portrayals in society and the media, examine how this exposure shapes their drinking attitudes, and investigate the alignment of policy-makers' views on drinking with those of young people. METHODS: Two qualitative research methods were employed. Seventy-two university students (38 men, 34 women) aged 20-24 participated in focus groups conducted on campus. Semi-structured interviews were conducted with academia, civil society and representatives from government who were involved in alcohol policy. Recorded data were transcribed verbatim, systematically coded and analysed using content analysis. RESULTS: Young Thais were regularly exposed to alcohol portrayals, particularly on social media and in their social environment. Being increasingly exposed to alcohol portrayals, particularly on social media, and the role of the alcohol industry emerged as concerning matters to the academia and civil society sectors. In response to the concerns, the government social media monitoring and alcohol censorship had become more challenging. CONCLUSIONS: This study reflects the growing concerns from academia and civil society sectors of the impacts of increased alcohol exposure and the role that the industry may have on young people's drinking attitudes. It highlights the need for response to significant policy challenges to reduce these impacts.

Brand advertising and brand sharing of alcoholic and non-alcoholic products, and the effects on young Thai people's attitudes towards alcohol use: A qualitative focus group study.

INTRODUCTION AND AIMS: The dominant Thai alcohol companies have strategically employed brand advertising and brand sharing (using a very similar branding for both alcoholic and non-alcoholic products) to circumvent restrictive alcohol advertising regulations. As empirical evidence confirms that exposure to alcohol advertisements increases youth drinking, young Thais could be at risk of constant and incidental exposure to alcohol advertising, hence leading to increased alcohol consumption. This study aims to explore young people's perceptions of these alcohol branding strategies and to examine how exposure to such advertising strategies affect their attitudes towards alcohol use. DESIGN AND METHODS: Seventy-two university students aged 20-24 years participated in 1.5-h semi-structured focus groups conducted in Bangkok and a peripheral province. Logos of two domestic alcohol brands were also used as part of projective techniques to elicit information. Thematic content analysis was used to analyse data. RESULTS: Despite a range of alcoholic and non-alcoholic products under the same branding, participants associated the logos primarily with beer-the flagship product. Branding strategies seemed to successfully increase young people's brand familiarity and affected their brand recognition and brand awareness. Participants had a high awareness of the alcohol companies' commercial activities but regarded alcohol advertisements to be indifferent to advertisements of other ordinary products. DISCUSSION AND CONCLUSIONS: Brand advertising is a dynamic tool that affects young people's attitudes towards the advertised brands and alcohol use. Due to early exposure to the brands, brand sharing increases brand familiarity and, among other factors, potentially affects drinking attitudes and purchase intentions.

A qualitative exploration of the Thai alcohol policy in regulating alcohol industry's marketing strategies and commercial activities.

INTRODUCTION AND AIMS: The recognition of the association between the use of alcohol and negative health outcomes have led to the endorsement of the World Health Organization's global strategy to reduce the harmful use of alcohol. Given the capacities, capabilities and sociocultural contexts of Thailand, this study aims to examine the Thai alcohol policy against the global strategy's recommended policy measures for marketing control and identify areas for further policy development. DESIGN AND METHODS: Semi-structured interviews were conducted with the stakeholders from three sectors: the government, academia and civil society. Their perceptions of the Thai alcohol policy in regulating alcohol industry's commercial strategies and activities were discussed. Audio data were transcribed verbatim, systematically coded and thematically analysed. RESULTS: Although the Thai Alcohol Control Act meticulously regulates the content of direct alcohol marketing, the volume of marketing and indirect alcohol marketing have become problematic and difficult for the government to address. The industry has worked to normalise the consumption of alcohol through repetitive brand exposure and their suggestion that drinking was integral for socialisation. The control of alcohol sponsorship was politically sensitive and legally ambiguous because alcohol sponsorship seemed to provide economic and social benefits and further reinforced the industry's positive image. DISCUSSION AND CONCLUSIONS: Despite the strict alcohol policy, gaps in the marketing regulations exist. Future policy development should place greater emphasis on alcohol sponsorship and branding through evidenced-based interventions. The interactions between the government and the industry should be monitored and restricted. Rigorous regulations, as seen for tobacco, are encouraged for alcohol marketing.

Seeking Help for Harm from Others' Drinking in Five Asian Countries: Variation Between Societies, by Type of Harm and by Source of Help.

AIMS: This study aims to measure the prevalence rates and patterns of help-seeking behavior as a consequence of being harmed by drinkers in five Asian countries (India, Sri Lanka, Vietnam, Lao PDR and Thailand). METHODS: A total of 9832 respondents aged 18-65 years from the WHO/ThaiHealth Collaborative Project were surveyed between 2012 and 2014 about their experiences of being negatively affected due to another's drinking, and whether and where they sought help, focusing on four adverse aspects of harms from others' drinking. RESULTS: The prevalence of seeking help from any source in the past year due to harm from others' drinking ranged from 7% to 20%. The most common service used by those who were affected by other people's drinking was asking for help from friends, followed by calling the police and using health-related services. The largest proportion of help-seeking was among those reporting property harm, followed by those being harmed physically and sexually by drinkers. CONCLUSION: Given a wide range of harms from others' drinking in the general population and different needs of those affected, prevalence rates for help-seeking behavior due to others' drinking in South and South East Asian countries were low and the help sought was often informal. There is a large knowledge gap in our understanding of the mechanisms of help-seeking behavior and the pathways for access to help among those affected. Further studies are important for enhancing the social response services available and making these more accessible to those who need help.

Re-thinking the health benefits of outstations in remote Indigenous Australia.

The small, decentralised communities, known as outstations which satellite larger Indigenous Australian remote communities have often been conceptualised as places that are beneficial to health and well-being. This paper provides an exploration of the meaning of an outstation for one family and the benefits that this connection brings to them, which are expressed in a deep connection to the land, continuing relationships with ancestors and a safe refuge from the stresses of the larger community. We argue that the outstation provides a place for people to be in control of their lives and form hopes and plans for the future. These benefits are positioned in a context where the future liveability and sustainability of the outstation is both fragile and vulnerable.

A qualitative exploration of Thai alcohol policy in regulating availability and access.

BACKGROUND: Despite abundant alcohol control regulations and measures in Thailand, prevalence of alcohol consumption has been relatively steady for the past decade and alcohol-related harm remains high. This study aims to explore, through the perspectives of key public health stakeholders, the current performance of regulations controlling alcohol availability and access, and the future directions for the implementation of Thai alcohol policy. METHODS: Semi-structured interviews were conducted with public health stakeholders from three sectors; the government, academia and civil society. Their perceptions about the current alcohol situation, gaps in the current policies, and future directions of alcohol policy were discussed. Audio data were transcribed verbatim, systematically coded and analysed. RESULTS: The three key concerning issues were physical availability, economic availability and commercial access, which referred to outlet density, taxation and pricing, and compliance to stipulated regulations, respectively. First, Thailand failed to control the number of alcohol outlets. The availability problem was exacerbated by the increased numbers of liquor licences issued, without delineating the need for the outlets. Second, alcohol tax rates, albeit occasionally adjusted, are disproportionate to the economic dynamic, and there is yet a minimum pricing. Finally, compliance to age and time restrictions was challenging. CONCLUSIONS: The lack of robustness of enforcement and disintegration of government agencies in regulating availability and access hampers effectiveness of alcohol policy. Comprehensive regulations for the control of availability of and access to alcohol are required to strengthen alcohol policy. Consistent monitoring and surveillance of the compliances are recommended to prevent significant effects of the regulations diminish over time.

Harm from others' drinking-related aggression, violence and misconduct in five Asian countries and the implications.

BACKGROUND: Harm from alcohol-attributable aggression and violence is linked to diminished personal safety and reduced physical and mental health and wellbeing in many countries. But there has been limited evidence on these harms in low- and middle-income countries (LMICs). This study measured harm from others' drinking-related aggression, violence and misconduct in five Asian LMICs (Thailand, Sri Lanka, India, Vietnam, and Lao PDR), aiming to compare the magnitude and pattern of harm across countries by gender, age group, educational level, rurality, and country-level indicators. METHODS: Data from 9832 respondents from the WHO/Thai Health International Collaborative Research Project on the Harm from Others' Drinking undertaken between 2012 and 2014 were analysed. FINDINGS: 50-73% of respondents from five countries reported being harmed at least once in the past year. Public disorder and feeling unsafe due to someone else's drinking was frequently reported, followed by harassment, assaults and threats, traffic harm, and property damage. In most countries, men were more likely than women to report traffic harms, property harm, and assaults, whereas women were more likely to report feeling unsafe in public. Being young, less educated, living in urban areas, and one's own drinking were significant predictors of more harm from others' drinking for both genders. CONCLUSIONS: This study revealed a consistently high prevalence of alcohol-related aggression and violence in the five Asian countries. Patterns of harm within countries and populations at most risk for different forms of harms were identified. Alongside services for those affected, efforts to strengthen alcohol policies are needed in each society.

Living the Social Determinants of Health: Assemblages in a Remote Aboriginal Community.

This article provides a critical discussion of the social determinants of health framework and compares it with theoretical perspectives, such as that offered by assemblage theory, offering an alternative view of the complex interplay between human relationships and the structures around us. We offer an ethnographic perspective, discussing the lived experiences of the social determinants in an Indigenous community in a remote part of northern Australia.

Temporal Associations of Alcohol and Tobacco Consumption With Cancer Mortality.

Importance: Understanding whether the population-level consumption of alcohol and tobacco is associated with cancer mortality is a crucial question for public health policy that has not been answered by previous studies. Objective: To examine temporal associations of alcohol and tobacco consumption with overall cancer mortality in the Australian population, looking across different sex and age groups. Design, Setting, and Participants: This population-based cohort study conducted a time series analysis (autoregressive integrated moving average models) using aggregate-level annual time series data from multiple sources. Data on alcohol consumption and tobacco consumption per capita between 1935 and 2014 among the Australian population aged 15 years and older were collected from the Australian Bureau of Statistics and Cancer Council Victoria. Analysis was conducted from June 1, 2017, to October 30, 2017. Exposures: Sex- and age-specific cancer mortality rates from 1968 to 2014 were collected from the Australian Institute Health and Welfare. Main Outcomes and Measures: Population-level cancer mortality in different sex and age groups in Australia, controlling for the effects of health expenditure. Results: Among the Australian total population aged 15 years and older in this study, 50.5% were women. Cancer death rates per 100 000 persons increased from 199 in 1968 to 214 in 1989 and then decreased steadily to 162 in 2014. Taking into account lagged effects, 1-L decreases in alcohol consumption per capita were associated with a decline of 3.9% in overall cancer mortality over a 20-year period, and 1-kg decreases in tobacco consumption per capita were associated with a 16% reduction. Alcohol consumption per capita was significantly associated with overall cancer mortality among men aged 50 to 69 years and women aged 50 years and older. Tobacco consumption per capita was found to be significantly associated with overall cancer mortality only among men aged 50 years and older. Conclusions and Relevance: In this study, alcohol consumption per capita was positively associated with overall cancer mortality among older men and women, and tobacco consumption per capita was positively associated with overall cancer mortality among older men over a 20-year period. This study provides evidence that a decrease in population-level drinking and tobacco smoking could lead to a reduction in cancer mortality.

The involvement of patient organisations in rare disease research: a mixed methods study in Australia.

BACKGROUND: We report here selected findings from a mixed-methods study investigating the role of Australian rare disease patient organisations (RDPOs) in research. Despite there being many examples of RDPOs that have initiated and supported significant scientific advances, there is little information - and none at all in Australia - about RDPOs generally, and their research-related goals, activities, and experiences. This information is a pre-requisite for understanding what RDPOs bring to research and how their involvement could be strengthened. METHODS: We reviewed 112 RDPO websites, conducted an online survey completed by 61 organisational leaders, and interviewed ten leaders and two key informants. Quantitative and qualitative data were analysed using basic descriptive statistics and content analysis, respectively. RESULTS: Although most are small volunteer-based groups, more than 90% of the surveyed RDPOs had a goal to promote or support research on the diseases affecting their members. Nearly all (95 %) had undertaken at least one research-related activity - such as providing funding or other support to researchers - in the previous five years. However, RDPO leaders reported considerable challenges in meeting their research goals. Difficulties most frequently identified were insufficient RDPO resources, and a perceived lack of researchers interested in studying their diseases. Other concerns included inadequate RDPO expertise in governing research "investments", and difficulty engaging researchers in the organisation's knowledge and ideas. We discuss these perceived challenges in the light of two systemic issues: the proliferation of and lack of collaboration between RDPOs, and the lack of specific governmental policies and resources supporting rare disease research and patient advocacy in Australia. CONCLUSION: This study provides unique information about the experiences of RDPOs generally, rather than experiences retrospectively reported by RDPOs associated with successful research. We describe RDPOs' valuable contributions to research, while also providing insights into the difficulties for small organisations trying to promote research. The study is relevant internationally because of what it tells us about RDPOs; however, we draw attention to specific opportunities in Australia to support RDPOs' involvement in research, for the benefit of current and future generations affected by rare diseases.

Developing a best practice pathway to support improvements in Indigenous Australians' mental health and well-being: a qualitative study.

OBJECTIVE: There is a need to adapt pathways to care to promote access to mental health services for Indigenous people in Australia. This study explored Indigenous community and service provider perspectives of well-being and ways to promote access to care for Indigenous people at risk of depressive illness. DESIGN: A participatory action research framework was used to inform the development of an agreed early intervention pathway; thematic analysis SETTING: 2 remote communities in the Northern Territory. PARTICIPANTS: Using snowball and purposive sampling, 27 service providers and community members with knowledge of the local context and the diverse needs of those at risk of depression were interviewed. 30% of participants were Indigenous. The proposed pathway to care was adapted in response to participant feedback. RESULTS: The study found that Indigenous mental health and well-being is perceived as multifaceted and strongly linked to cultural identity. It also confirms that there is broad support for promotion of a clear pathway to early intervention. Key identified components of this pathway were the health centre, visiting and community-based services, and local community resources including elders, cultural activities and families. Enablers to early intervention were reported. Significant barriers to the detection and treatment of those at risk of depression were identified, including insufficient resources, negative attitudes and stigma, and limited awareness of support options. CONCLUSIONS: Successful early intervention for well-being concerns requires improved understanding of Indigenous well-being perspectives and a systematic change in service delivery that promotes integration, flexibility and collaboration between services and the community, and recognises the importance of social determinants in health promotion and the healing process. Such changes require policy support, targeted training and education, and ongoing promotion.