Using a participatory action research framework to listen to Aboriginal and Torres Strait Islander people in Australia about pandemic influenza.

INTRODUCTION: This article describes the use and effectiveness of the participatory action research (PAR) framework to better understand community members' perceptions and risks of pandemic influenza. In 2009, the H1N1 influenza pandemic affected Indigenous populations more than non-Indigenous populations in Oceania and the Americas. Higher prevalence of comorbidities (diabetes, obesity, asthma and chronic obstructive pulmonary disease) as well as pregnancy in Indigenous communities may have contributed to the higher risks of severe disease. Social disparity, institutionalised racism within health services and differences in access to culturally safe health services have also been reported as contributors to disadvantage and delayed appropriate treatment. METHODS: Given these factors and the subsequent impact they had on Australian Aboriginal and Torres Strait Islander communities, the authors set out to ensure that the Australian national, state and territory pandemic plans adequately reflected the risk status of Aboriginal and Torres Strait Islander peoples and promoted meaningful engagement with communities to mitigate this risk. A national study explored the views of Aboriginal and Torres Strait Islander people and their experiences with H1N1 and used a qualitative PAR framework that was effective in gaining deep understandings from participants. Aboriginal and Torres Strait Islander community-controlled organisations and health services were involved in the implementation, interpretation and monitoring of this project. RESULTS: As a result, important features of the implementation of this PAR framework with Aboriginal and Torres Strait Islander communities and organisations emerged. These features included the importance of working in a multidisciplinary team with Aboriginal and Torres Strait Islander researchers; the complexities and importance of obtaining multi-site human research ethics approval processes; the importance and value of building the research capacity of both experienced and novice researchers in PAR; the need to use localised sampling protocols; and the process of undertaking a collective research process and enacting action research and feedback. CONCLUSIONS: The most effective responses of this project were embedded in pre-existing relationships with individuals within organisations that had been established over a long period of time between Aboriginal medical services and investigators; however, research relationships established specifically for the purposes of the project were less successful because of changes in personnel and organisational support. The participatory approach used in this study has the potential to be applied to vulnerable populations in other countries.

The logics of planned birthplace for remote Australian Aboriginal women in the northern territory: A discourse and content analysis of clinical practice manuals.

OBJECTIVE: the aim of this research is to review the content, and describe the structural and contextual discourse around planned birthplace in six clinical practice manuals used to care for pregnant Aboriginal women in Australia׳s remote Northern Territory. The purpose is to better understand where, how and why planned birthplaces for Aboriginal women have changed over time. METHODS: content and discourse analysis was applied to the written texts pertaining to maternal health care and the results placed within a theoretical framework of Daviss׳s Logic. FINDINGS: the manuals demonstrate the use of predominantly scientific and clinical logic to sanction birthplace. Planned birthplace choices have declined over time, with hospital now represented as the only place to give birth. This is in opposition to Aboriginal women׳s longstanding requests and is not supported by robust scientific evidence. CONCLUSIONS: despite scientific and clinical logics dominating the sanctioning of birthplace for Aboriginal women, conjecture is apparent between assumed logics and evidence. There needs to be further critical reflection on why Aboriginal women do not have planned birthplace choices, and these reasons, once identified, debated and addressed both in research agendas and policy re-development.

Paperbark and pinard: A historical account of maternity care in one remote Australian Aboriginal town.

BACKGROUND AND AIM: Maternity care in remote areas of the Australian Northern Territory is restricted to antenatal and postnatal care only, with women routinely evacuated to give birth in hospital. Using one remote Aboriginal community as a case study, our aim with this research was to document and explore the major changes to the provision of remote maternity care over the period spanning pre-European colonisation to 1996. METHODS: Our research methods included historical ethnographic fieldwork (2007-2013); interviews with Aboriginal women, Aboriginal health workers, religious and non-religious non-Aboriginal health workers and past residents; and archival review of historical documents. FINDINGS: We identified four distinct eras of maternity care. Maternity care staffed by nuns who were trained in nursing and midwifery serviced childbirth in the local community. Support for community childbirth was incrementally withdrawn over a period, until the government eventually assumed responsibility for all health care. CONCLUSIONS: The introduction of Western maternity care colonised Aboriginal birth practices and midwifery practice. Historical population statistics suggest that access to local Western maternity care may have contributed to a significant population increase. Despite population growth and higher demand for maternity services, local maternity services declined significantly. The rationale for removing childbirth services from the community was never explicitly addressed in any known written policy directive. Declining maternity services led to the de-skilling of many Aboriginal health workers and the significant community loss of future career pathways for Aboriginal midwives. This has contributed to the current status quo, with very few female Aboriginal health workers actively providing remote maternity care.

'Jumping around': exploring young women's behaviour and knowledge in relation to sexual health in a remote Aboriginal Australian community.

Sexual health indicators for young remote-living Aboriginal women are the worst of all of Australian women. This study aimed to describe and explore young women's behaviour and knowledge in relation to sexual health, as well as to provide health professionals with cross-cultural insights to assist with health practice. A descriptive ethnographic study was conducted, which included: extended ethnographic field work in one remote community over a six-year period; community observation and participation; field notes; semi-structured interviews; group reproductive ethno-physiology drawing and language sessions; focus-group sessions; training and employment of Aboriginal research assistants; and consultation and advice from a local reference group and a Cultural Mentor. Findings reveal that young women in this remote community have a very poor biomedical understanding of sexually transmitted infections and contraception. This is further compounded by not speaking English as a first language, low literacy levels and different beliefs in relation to body functions. In their sexual relationships, young women often report experiences involving multiple casual partners, marijuana use and violence. Together, the findings contribute to a better understanding of the factors underlying sexual health inequity among young Aboriginal women in Australia.

Barriers and enablers to the provision of alcohol treatment among Aboriginal Australians: a thematic review of five research projects.

INTRODUCTION AND AIMS: To review the results of five research projects commissioned to enhance alcohol treatment among Aboriginal Australians, and to highlight arising from them. DESIGN AND METHODS: Drafts of the papers were workshopped by project representatives, final papers reviewed and results summarised. Lessons arising were identified and described. RESULTS: While the impact of the projects varied, they highlight the feasibility of adapting mainstream interventions in Aboriginal Australian contexts. Outcomes include greater potential to: screen for those at risk; increase community awareness; build capacity and partnerships between organisations; and co-ordinate comprehensive referral networks and service provision. DISCUSSION: Results show a small investment can produce sustainable change and positive outcomes. However, to optimise and maintain investment, cultural difference needs to be recognised in both planning and delivery of alcohol interventions; resources and funding must be responsive to and realistic about the capacities of organisations; partnerships need to be formed voluntarily based on respect, equality and trust; and practices and procedures within organisations need to be formalised. CONCLUSIONS: There is no simple way to reduce alcohol-related harm in Aboriginal communities. However, the papers reviewed show that with Aboriginal control, modest investment and respectful collaboration, service enhancements and improved outcomes can be achieved. Mainstream interventions need to be adapted to Aboriginal settings, not simply transferred. The lessons outlined provide important reflections for future research.

'It still leaves me sixty dollars out of pocket': experiences of diabetes medical care among low-income earners in Perth.

Diabetes prevalence is increasing in Australia, and there are stark inequities in prevalence and clinical outcomes experienced by Indigenous people and low socioeconomic groups compared with non-Indigenous and socioeconomically advantaged groups. This paper explores the impact of Indigenous status and socioeconomic disadvantage on the experience of diabetes care in the primary health setting. Data were collected through focus groups and interviews. The sample, comprising 38 participants (Indigenous and non-Indigenous), was recruited from disadvantaged areas in Perth, Australia. Data analysis was mainly deductive and based on a conceptual framework for the relationship between socioeconomic position and diabetes health outcomes. Most participants reported accessing general practitioners regularly; however, evidence of access to dietitians and podiatrists was very limited. Perceived need, cost, lack of information on available services and previous negative experiences influenced health care-seeking behaviour. Complexity and lack of coordination characterised the model of care reported by most participants. In contrast, Indigenous participants accessing an Aboriginal community-controlled health organisation reported a more accessible and coordinated experience of care. Our analysis suggests that Indigenous and socioeconomically disadvantaged people tailor their health care-seeking behaviour to the limitations imposed by their income and disadvantaged circumstances. To reduce inequities in care experiences, diabetes services in primary care need to be accessible and responsive to the needs of such groups in the community.

"Makes you proud to be black eh?": reflections on meaningful indigenous research participation.

INTRODUCTION: This article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur. DISCUSSION: A key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community members as researchers, focus needs to be paid to what constitutes meaningful participation. If active participation in all aspects of the research process is intended, this necessitates close attention to the knowledge and skills required for this to occur at every stage. Building research capacity means not simply equipping local people to undertake research on a particular project, but to have the knowledge and skills to undertake research in other areas. CONCLUSIONS: There are considerable benefits for Indigenous people researching in their own communities. Most important for the community researchers on this project was the sense that they were doing important health work, not just conducting research. Given the persistent gaps between Indigenous and non-Indigenous health, this is perhaps one of the most important contributions of this type of research. Whilst research outcomes are undoubtedly important, in many cases the process used is of greater importance.

Australian Aboriginal and Torres Strait Islander communities and the development of pandemic influenza containment strategies: community voices and community control.

OBJECTIVES: To develop culturally appropriate and effective strategies to reduce the risk from pandemic influenza (H1N109) in rural and remote Australian Aboriginal and Torres Strait Islander communities. METHODS: Participatory Action Research (PAR) approach that enabled communities and researchers to work together to develop understanding and take action to reduce risk. RESULTS: The H1N109 pandemic raised deep concerns and serious issues in all of the Aboriginal and Torres Strait Islander communities involved in this project. The participants expressed distrust and scepticism in relation to current Australian health policies on containment and told the researchers that specific plans for Aboriginal and Torres Strait Islander peoples were needed. Respondents indicated that policies and plans had been developed without respectful engagement with communities. The strong and recurring themes that emerged from the PAR cycles were: the importance of family; ways of life and realities of living in response to influenza; and key messages to government and health services to focus on communication, understanding and respect. CONCLUSION: The essential work of reducing risk of pandemic influenza with Aboriginal and Torres Strait Islander communities is not straightforward, but this project has highlighted a number of useful pathways to continue to journey along with communities. A number of strategies to reduce the spread of pandemic influenza in Aboriginal and Torres Strait Islander communities were identified. These strategies would make a good starting point for conversations with communities and health services. In Aboriginal and Torres Strait Islander communities the environment, community structures and traditions vary. Respectful engagement with communities is needed to develop effective policy.

In search of wellness: allied health professionals' understandings of wellness in childhood disability services.

PURPOSE: Wellness approaches are not routine in childhood disability services, despite theoretical and empirical support and an increasing demand for them from health consumers and disability activists. We aimed to investigate how health professionals define or understand wellness and its practice in the context of childhood disability. METHOD: A qualitative, interpretive approach was taken. Semi-structured interviews were conducted with 23 health professionals (allied health therapists and managers) providing early intervention and ongoing therapy within four Australian childhood health and disability services. Years of experience providing services to children with disabilities and their families ranged from 6 months to 30 years (M=9.41, SD=9.04). RESULTS: The data revealed a noteworthy impediment to incorporating wellness into practice - the difficulties in the allied health professionals reaching consensus in defining wellness. There appeared to be distinct differences between the four services, while there appeared to be no appreciable difference based on the individual professional's years of experience or allied health discipline. CONCLUSIONS: The effect of organisational culture should be considered in efforts to embed wellness in childhood health and disability services in order to address client well-being, empowerment, choice, independence and rights to meaningful and productive lives.

Managing alcohol-related problems among Indigenous Australians: what the literature tells us.

OBJECTIVE: To contextualise and provide an overview of two review papers--prepared as part of a larger research program--dealing with different aspects of the treatment of Indigenous Australians with alcohol-related problems. METHOD: The papers were reviewed thematically and compared to identify key issues raised in them. FINDINGS: Together, the papers highlight the paucity of the evidence base for the provision of treatment for Indigenous Australians with alcohol-related problems. Among the key issues identified are: the need to engage with clients in culturally safe ways; practitioner, organisational and client barriers to engagement; the contexts in which Indigenous drinking and treatment take place; the need to develop rigorous methods of evaluation more appropriate to Indigenous cultural and service provision settings; and the importance of effective partnerships in the provision of services. CONCLUSION: For those working in the field, the reviews direct attention to the need to review and interrogate our current practice. They also provide clear directions for future research.

Retention in the allied health workforce: boomers, generation X, and generation Y.

The recruitment and retention of allied health workers present challenges for organizations in Australia and internationally. Australia, in common with other developed countries, faces the prospect of a rapidly aging population and the high turnover of younger allied health workers (the majority of whom are female) from employing organizations. Emphases on the individual characteristics of Boomer, Generation X, and Generation Y workers may provide a useful starting base for recruitment and retention strategies, but our study shows that these need to be contextualized within broader political, social, and structural factors that take account of gender and the changing needs of workers over their life span.

Reducing the risk of pandemic influenza in Aboriginal communities.

CONTEXT: Aboriginal people are particularly vulnerable to pandemic influenza A, H1N109. This was first recognized in the First Nations of Canada. There have been calls for close planning with Aboriginal people to manage these risks. This article describes the process and findings from preliminary community consultations into reducing influenza risk, including pandemic H1N1(09) swine influenza, in Aboriginal communities in the Hunter New England area of northern New South Wales, Australia. ISSUE: Consultation was conducted with 6 Aboriginal communities in response to the rapidly evolving pandemic and was designed to further develop shared understanding between health services and Aboriginal communities about appropriate and culturally safe ways to reduce the influenza risk in communities. Agreed risk mitigation measures identified in partnership are being introduced throughout Hunter New England area. LESSONS LEARNED: Five theme areas were identified that posed particular challenges to limiting the negative impact of pandemic influenza; and a number of potential solutions emerged from focus group discussions: (1) local resource person: local identified 'go to' people are heard and trusted, but need to have an understanding of H1N109; (2) clear communication: information must be presented simply, clearly and demonstrating respect for local culture; (3) access to health services: sick people need to know where to get help and how to get there without infecting others; (4) households and funerals: infection control messages should be aligned with the reality of life in Aboriginal communities, and the importance of attending family and cultural gatherings; (5) social and community support issues: Aboriginal people need to have a say in how support is provided. Influenza pandemics are a serious threat to the health and social functioning of Aboriginal communities. Measures to reduce the risk of influenza in communities must be developed with the communities to maximise their acceptance. The process of engagement and ongoing respectful negotiations with communities is critical to developing culturally appropriate pandemic mitigation and management strategies.

Toward embedding wellness approaches to health and disability in the policies and practices of allied health providers.

Wellness approaches, based on the social model of disability, are increasingly preferred throughout the health and disability service sectors. Despite this preference, there is a clear misalignment between policy and practice, and many allied health services continue to operate according to medical models of illness. To present an argument toward the incorporation of wellness approaches to health and disability in the policies and practices of allied health providers in Australia, this review is organized into four sections. First, the history and antecedents of wellness approaches, including the social model of disability, and relationships between them, are presented and discussed. Second, the current theoretical, empirical, social, and political demands for the implementation of wellness approaches are examined, with a particular emphasis on allied health settings. Next, the factors that facilitate and impede the uptake and implementation of wellness approaches in allied health settings are examined. We conclude with a discussion of the implications for allied health practice, education, and research.

'Semen contains vitality and heredity, not germs': seminal discourse in the AIDS era.

Perspectives of public health generally ignore culture-bound sexual health concerns, such as semen loss, and primarily attempt to eradicate sexually transmitted infections (STIs), including human immunodeficiency virus (HIV). Like in many other countries, sexual health concerns of men in Bangladesh have also received less attention compared to STIs in the era of AIDS. This paper describes the meanings of non-STI sexual health concerns, particularly semen loss, in the masculinity framework. In a qualitative study on male sexuality, 50 men, aged 18-55 years, from diverse sociodemographic backgrounds and 10 healthcare practitioners were interviewed. Men considered semen the most powerful and vital body fluid representing their sexual performance and reproductive ability. Rather than recognizing the vulnerability to transmission of STIs, concerns about semen were grounded in the desire of men to preserve and nourish seminal vitality. Traditional practitioners supported semen loss as a major sexual health concern where male heritage configures male sexuality in a patriarchal society. Currently, operating HIV interventions in the framework of disease and death may not ensure participation of men in reproductive and sexual health programmes and is, therefore, less likely to improve the quality of sexual life of men and women.

Men who have sex with men's sexual relations with women in Bangladesh.

Studies of men who have sex with men in South Asian countries including Bangladesh have tended to focus mainly on measuring male-to-male sexual risk behaviours, with less attention being given to understanding the nature and meaning of their sexual relations with women. This can result in missed opportunities for HIV/AIDS-related intervention. This paper, based on a small scale qualitative study, attempts to develop a cultural model to understand men who have sex with men's sexual relations with women within a gender and masculinity framework. Findings reveal that in Bangladesh men who have sex with men frequently surrender to societal pressures to marry, become husbands and shoulder fatherhood. This forces some women to become the silent sufferers of some of the negative consequences of hetero-normative patriarchal practice. Importantly, however, men who have sex with men consider sex with women a form of real sex within a framework of masculine sexual potency irrespective of preference, desire or eroticism. Thus, challenges exist to undertaking sexual health promotion and HIV/AIDS prevention in culturally sensitive ways.

Safer sex or pleasurable sex? Rethinking condom use in the AIDS era.

BACKGROUND: Condom use in Bangladesh is low despite nationwide family planning initiatives and HIV interventions. METHODS: Fifty men aged between 18 and 55 years from diverse socio-demographic backgrounds and five key informants were interviewed in a qualitative male sexuality study. RESULTS: Refusal to use condoms is not only a personal choice, but pertains to relationships. The meanings of reduced bodily pleasure associated with condom use are socially constructed. Men's emotions and trust expressed through understanding of direct penile-vaginal contact and ejaculation inside the vagina as 'pure' and 'natural' sex oppose condom use. Sexual prowess in the form of prolonged intercourse without condoms, as depicted in Western pornography, was perceived as a 'real man's' sexual skill. Men sought to preserve a 'good man's' image by avoiding condoms, which symbolised promiscuous men in AIDS educational messages. CONCLUSION: Social dimensions of masculine sexuality, pleasure, eroticism and the emotional aspect of men's lives have to be addressed for effective condom promotion.