Dawn Bessarab

'Nowhere to room … nobody told them': logistical and cultural impediments to Aboriginal peoples' participation in cancer treatment

BACKGROUND Cancer mortality among Indigenous Australians is higher compared to the non-Indigenous population and attributed to poor access to cancer detection, screening, treatment and support services. A large proportion of Indigenous Australians live in rural and remote areas which makes access to cancer treatment services more challenging. Factors, such as transport, accommodation, poor socio-economic status and cultural appropriateness of services also negatively affect health service access and, in turn, lead to poor cancer outcomes. DESIGN, SETTING AND PARTICIPANTS Qualitative research with 30 in-depth interviews was conducted with Aboriginal people affected by cancer from across WA, using a variety of recruitment approaches. RESULTS The infrastructure around the whole-of-treatment experience affected the decision-making and experiences of Aboriginal patients, particularly affecting rural residents. Issues raised included transport and accommodation problems, travel and service expenses, displacement from family, concerns about the hospital environment and lack of appropriate support persons. These factors are compounded by a range of disadvantages already experienced by Aboriginal Australians and are vital factors affecting treatment decision-making and access. CONCLUSION To improve cancer outcomes for Aboriginal people, logistical, infrastructure and cultural safety issues must be addressed. One way of ensuring this could be by dedicated support to better coordinate cancer diagnostic and treatment services with primary healthcare services.

Barriers and incentives to HIV treatment uptake among Aboriginal people in Western Australia

Objective:To examine the barriers and incentives to HIV treatment uptake among Aboriginal people in Western Australia. Methods:In-depth, semi-structured interviews were conducted between February and September 2003 with 20 Aboriginal people who were HIV-positive; almost half the total number of Aboriginal people known to be living with HIV in Western Australia at that time. Results:Despite having access to treatments in both urban and rural areas, only 11 of the 20 participants were on antiretroviral treatment at the time of interview. Four of the women had been prescribed treatment during pregnancy only. The main barriers to treatment uptake were fear of disclosure and discrimination, heavy alcohol consumption and poverty. The incentives were pregnancy and access to services whose approach can be described as broad-based and holistic, i.e. supporting people in the context of their everyday lives by providing psychosocial and welfare support as well as healthcare. Conclusion:For many Aboriginal people, maintaining social relationships, everyday routines and the respect of friends, families and community is a greater priority than individual health per se. Treatment regimens must be tailored to fit the logistical, social and cultural context of everyday life, and be delivered within the context of broad-based health services, in order to be feasible and sustainable.

Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers

BackgroundAboriginal Australians experience poorer outcomes from cancer compared to the non-Aboriginal population. Some progress has been made in understanding Aboriginal Australians’ perspectives about cancer and their experiences with cancer services. However, little is known of cancer service providers’ (CSPs) thoughts and perceptions regarding Aboriginal patients and their experiences providing optimal cancer care to Aboriginal people. Communication between Aboriginal patients and non-Aboriginal health service providers has been identified as an impediment to good Aboriginal health outcomes. This paper reports on CSPs’ views about the factors impairing communication and offers practical strategies for promoting effective communication with Aboriginal patients in Western Australia (WA).MethodsA qualitative study involving in-depth interviews with 62 Aboriginal and non-Aboriginal CSPs from across WA was conducted between March 2006 - September 2007 and April-October 2011. CSPs were asked to share their experiences with Aboriginal patients and families experiencing cancer. Thematic analysis was carried out. Our analysis was primarily underpinned by the socio-ecological model, but concepts of Whiteness and privilege, and cultural security also guided our analysis.ResultsCSPs’ lack of knowledge about the needs of Aboriginal people with cancer and Aboriginal patients’ limited understanding of the Western medical system were identified as the two major impediments to communication. For effective patient–provider communication, attention is needed to language, communication style, knowledge and use of medical terminology and cross-cultural differences in the concept of time. Aboriginal marginalization within mainstream society and Aboriginal people’s distrust of the health system were also key issues impacting on communication. Potential solutions to effective Aboriginal patient-provider communication included recruiting more Aboriginal staff, providing appropriate cultural training for CSPs, cancer education for Aboriginal stakeholders, continuity of care, avoiding use of medical jargon, accommodating patients’ psychosocial and logistical needs, and in-service coordination.ConclusionIndividual CSPs identified challenges in cross-cultural communication and their willingness to accommodate culture-specific needs within the wider health care system including better communication with Aboriginal patients. However, participants’ comments indicated a lack of concerted effort at the system level to address Aboriginal disadvantage in cancer outcomes.

Aboriginal-mainstream partnerships: Exploring the challenges and enhancers of a collaborative service arrangement for Aboriginal clients with substance use issues

BackgroundPartnerships between different health services are integral to addressing the complex health needs of vulnerable populations. In Australia, partnerships between Aboriginal1 community controlled and mainstream services can extend health care options and improve the cultural safety of services. However, although government funding supports such collaborations, many factors can cause these arrangements to be tenuous, impacting the quality of health care received. Research was undertaken to explore the challenges and enhancers of a government initiated service partnership between an Aboriginal Community Controlled alcohol and drug service and three mainstream alcohol rehabilitation and support services.MethodsSixteen staff including senior managers (n=5), clinical team leaders (n=5) and counsellors (n=6) from the four services were purposively recruited and interviewed. Interviews were semi-structured and explored staff experience of the partnership including the client intake and referral process, shared client care, inter-service communication and ways of working.Results & discussionCommunication issues, partner unfamiliarity, ‘mainstreaming’ of Aboriginal funding, divergent views regarding staff competencies, client referral issues, staff turnover and different ways of working emerged as issues, emphasizing the challenges of working with a population with complex issues in a persistent climate of limited resourcing. Factors enhancing the partnership included adding a richness and diversity to treatment possibilities and opportunities to explore different, more culturally appropriate ways of working.ConclusionWhile the literature strongly advises partnerships be suitably mature before commencing service delivery, the reality of funding cycles may require partnerships become operational before relationships are adequately consolidated. Allowing sufficient time and funding for both the operation and relational aspects of a partnership is critical, with support for partners to regularly meet and workshop arrangements. Documentation that makes clear and embeds working arrangements between partners is important to ameliorate many of the issues that can arise. Given the historical undercurrents, flexible approaches are required to focus on strengths that contribute to progress, even if incremental, rather than on weaknesses which can undermine efforts. This research offers important lessons to assist other services collaborating in post-colonial settings to offer treatment pathways for vulnerable populations.

‘Everything is okay’: The influence of neoliberal discourse on the reported experiences of Aboriginal people in Western Australia who are HIV‐positive

While Australian Aboriginal conceptions of health have been described as holistic and collective, contemporary approaches to health services and health research are often premised on the rational, reflexive subject of neoliberal discourse. This paper considers how neoliberal conceptions of health and subjectivity arose and were negotiated in the context of a qualitative research project on Aboriginal experiences of HIV in Western Australia. Questions about ‘coping’, ‘future’ and ‘life changes’ stood out in the interview transcripts as examples of neoliberal discourse. This paper explores the reflexive, contextual and deflective responses to these questions and suggests they demonstrate how neoliberal discourse can produce the impression that ‘everything is okay’ despite the difficult social and economic conditions of everyday life experienced by many Aboriginal people. Aboriginal people with a chronic and serious infectious disease such as HIV may utilise the language of self‐management and responsibility when talking about HIV with a non‐Aboriginal researcher for pragmatic and utilitarian reasons. In this way, the responses of the Aboriginal participants in this study provide a valuable opportunity for exploring new approaches to both research methodology and health service delivery.

Aboriginal Practitioners Speak Out: Contextualising Child Protection Interventions

Abstract One month before the June 2007 Federal Government Emergency Intervention in the Northern Territory some 55 West Australian Aboriginal child protection workers attended a 3-day summit in Fremantle. Their purpose as front-line practitioners from across the State was to identify how more nurturing and healing communities could be developed and supported in a climate of despair. This paper reports on how the summit was designed and on some of the ideas and concerns that emerged within this dialogical space of cooperative inquiry. The project was a partnership between Aboriginal and non-Aboriginal representatives of university, government, and community-service bodies. Aboriginal practitioners identified the complexity of what was happening in their experience and where changes were needed. Integral to this participation and coproduction of knowledge by Aboriginal child protection workers was the provision of a safe space for the articulation of reflected experience. Implications for policy, practice, and curriculum of both process and outcome dimensions to considering Aboriginal views on this contentious issue are discussed.

Examining the potential contribution of social theory to developing and supporting Australian Indigenous-mainstream health service partnerships

IntroductionThe substantial gap in life expectancy between Indigenous and non-Indigenous Australians has been slow to improve, despite increased dedicated funding. Partnerships between Australian Indigenous and mainstream Western biomedical organisations are recognised as crucial to improved Indigenous health outcomes. However, these partnerships often experience challenges, particularly in the context of Australia´s race and political relations.MethodsWe examined the relevant literature in order to identify the potential role for social theory and theoretical models in developing and maintaining intercultural partnerships. Having identified relevant theoretical models, terms and possible key words, a range of databases were searched and relevant articles selected for inclusion. An integrative approach brought together theoretical models and practical considerations about working in partnership, to inform our analysis of the literature.FindingsConsidering partnerships between Australian Indigenous and mainstream health organisations as `bi-cultural´ is simplistic: rather they are culturally diverse across social and professional levels. As such, partnerships between Australian Indigenous and mainstream health organisations may be better conceptualised as `intercultural´, operating across diverse and shifting cultural frames of reference. Theories identified by this review as useful to guide partnerships include power relations, reflexivity and dialogue, borders and strangeness and the intercultural or third space. This paper examines how these theoretical approaches can develop understanding and improve intercultural engagement between mainstream and Australian Indigenous partners in healthcare.ConclusionsRather than viewing partnerships merely as arrangements between disembodied entities, sometimes contractual in nature, they are better seen as activities between people and organisations and essentially dependent on relationships, occurring in an intercultural space that is complex, dynamic and subject to changes in power relations. Theoretical models aiming to understand and improve partnerships indicate the complexity of building and maintaining such partnerships and stress the importance of understanding factors that can strengthen or derail their effectiveness. While the theories presented here are by no means exhaustive, they nonetheless provide a series of entry points through which to engage with the issue and expand the discourse. This approach allows the transformative nature of Australian Indigenous-mainstream `culture´ to be explored and understood in its lived expression; rather than relegated to prescriptive categories.

Voting with their feet - predictors of discharge against medical advice in Aboriginal and non-Aboriginal ischaemic heart disease inpatients in Western Australia: an analytic study using data linkage

BackgroundDischarge Against Medical Advice (DAMA) from hospital is associated with adverse outcomes and is considered an indicator of the responsiveness of hospitals to the needs of Aboriginal and Torres Strait Islander Australians, the indigenous people of Australia. We investigated demographic and clinical factors that predict DAMA in patients experiencing their first-ever inpatient admission for ischaemic heart disease (IHD). The study focuses particularly on the differences in the risk of DAMA in Aboriginal and non-Aboriginal patients while also investigating other factors in their own right.MethodsA cross-sectional analytical study was undertaken using linked hospital and mortality data with complete coverage of Western Australia. Participants included all first-ever IHD inpatients (aged 25–79 years) admitted between 2005 and 2009, selected after a 15-year clearance period and who were discharged alive. The main outcome measure was DAMA as reflected in the hospital record.Multiple logistic regression was used to determine disparities in DAMA between Aboriginal and non-Aboriginal patients, adjusting for a range of demographic and clinical factors, including comorbidity based on 5-year hospitalization history. A series of additional models were run on subgroups of the cohort to refine the analysis. Ethics approval was granted by the WA Human Research and the WA Aboriginal Health Ethics Committees.ResultsAboriginal patients comprised 4.3% of the cohort of 37,304 IHD patients and 23% of the 224 DAMAs. Emergency admission (OR=5.9, 95% CI 2.9-12.2), alcohol admission history (alcohol-related OR=2.9, 95% CI 2.0-4.2) and Aboriginality (OR 2.3, 95% CI 1.5-3.5) were the strongest predictors of DAMA in the multivariate model. Patients living in rural areas while attending non-metropolitan hospitals had a 50% higher risk of DAMA than those living and hospitalised in metropolitan areas. There was consistency in the ORs for Aboriginality in the different multivariate models using restricted sub-cohorts and different Aboriginal identifiers. Sex, IHD diagnosis type and co-morbidity scores imparted different risks in Aboriginal versus non-Aboriginal patients.ConclusionsUnderstanding the risks and reasons for DAMA is important for health system policy and proactive management of those at risk of DAMA. Improving care to prevent DAMA should target unplanned admissions, rural hospitals and young men, Aboriginal people and those with alcohol and mental health comorbidities.

Perspectives on intimate partner violence in Swaziland amongst 18–29-year-old men undergoing medical circumcision

Intimate partner violence (IPV) is perceived as a major contributor to HIV transmission in Swaziland. This exploratory study aimed to develop a culturally-specific understanding of mens perspectives of IPV. Focus group methods were used to gather information from 45 young urban Swazi men who had undergone medical male circumcision. A thematic analysis was conducted focussing on the manifestations of IPV and socio-cultural and economic factors which underpin, circumstances which trigger and social responses to IPV. The study identified numerous forms of economic, physical, emotional and sexual abuse that study participants perceived men used to control women in Swaziland. Many of these directly increased a womans risk of HIV infection, including knowingly infecting a woman with HIV and intentionally impregnating a woman, a practice that has not previously been highlighted in the literature. Aspects of Swazi culture that may facilitate these particular forms of abuse are discussed. This study highlights the need for the gender issues which underpin IPV to be addressed in HIV prevention in Swaziland and for the development of an informed understanding of how and why IPV occurs in the Swazi context.

Improving healthcare for Aboriginal Australians through effective engagement between community and health services

BackgroundEffectively addressing health disparities between Aboriginal and non-Aboriginal Australians is long overdue. Health services engaging Aboriginal communities in designing and delivering healthcare is one way to tackle the issue. This paper presents findings from evaluating a unique strategy of community engagement between local Aboriginal people and health providers across five districts in Perth, Western Australia. Local Aboriginal community members formed District Aboriginal Health Action Groups (DAHAGs) to collaborate with health providers in designing culturally-responsive healthcare. The purpose of the strategy was to improve local health service delivery for Aboriginal Australians.MethodsThe evaluation aimed to identify whether the Aboriginal community considered the community engagement strategy effective in identifying their health service needs, translating them to action by local health services and increasing their trust in these health services. Participants were recruited using purposive sampling. Qualitative data was collected from Aboriginal participants and health service providers using semi-structured interviews or yarning circles that were recorded, transcribed and independently analysed by two senior non-Aboriginal researchers. Responses were coded for key themes, further analysed for similarities and differences between districts and cross-checked by the senior lead Aboriginal researcher to avoid bias and establish reliability in interpreting the data. Three ethics committees approved conducting the evaluation.ResultsFindings from 60 participants suggested the engagement process was effective: it was driven and owned by the Aboriginal community, captured a broad range of views and increased Aboriginal community participation in decisions about their healthcare. It built community capacity through regular community forums and established DAHAGs comprising local Aboriginal community members and health service representatives who met quarterly and were supported by the Aboriginal Health Team at the local Population Health Unit. Participants reported health services improved in community and hospital settings, leading to increased access and trust in local health services.ConclusionThe evaluation concluded that this process of actively engaging the Aboriginal community in decisions about their health care was a key element in improving local health services, increasing Aboriginal people’s trust and access to care.