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1.  Rural–urban differentials in 30-day and 1-year mortality following first-ever heart failure hospitalisation in Western Australia: a population-based study using data linkage 
BMJ Open  2014;4(5):e004724.
Objectives
We examined differentials in short-term (30-day mortality) and 1-year mortality (in 30-day survivors) following index (first-ever) hospitalisation for heart failure (HF), between rural and metropolitan patients resident in Western Australia.
Design
A population-based cohort study.
Setting
Hospitalised patients in Western Australia, Australia.
Participants
Index patients aged 20–84 years with a first-ever hospitalisation for HF between 2000 and 2009 (with no prior admissions for HF in previous 10 years), identified using the Western Australia linked health data.
Main outcome measures
30-day and 1-year all-cause mortality (in 30-day survivors) following index admission for HF.
Results
Of 17 379 index patients with HF identified, 25.9% (4499) were from rural areas. Rural patients were significantly younger at first HF hospitalisation than metropolitan patients. Aboriginal patients comprised 1.9% of metropolitan and 17.2% of rural patients. Despite some statistical differences, the prevalence of antecedents including ischaemic heart disease, hypertension, diabetes and chronic kidney disease was high (>20%) in both subpopulations. After adjusting for age only, patients from rural areas had a higher risk of 30-day death (OR 1.16 (95% CI 1.01 to 1.33)) and 1-year death in 30-day survivors (HR 1.11 (95% CI 1.01 to 1.23)). These relative risk estimates increased and remained significant after further progressive adjustments for Aboriginality, socioeconomic status, insurance status, emergency presentation, individual comorbidities and revascularisation with OR 1.25 (1.06 to 1.48) for 30-day mortality and HR 1.13 (1.02 to 1.27) for 1-year mortality. The addition of the weighted Charlson index to the 30-day model improved the ‘c’ statistic (under the receiver operating characteristic curve) from 0.656 (using a variation of administrative claims model) to 0.714.
Conclusions
Remoteness and variable access to healthcare can cause important disparities in health outcomes. Rural patients with HF in Western Australia have poorer risk-adjusted outcomes compared with metropolitan patients. This finding has important implications for chronic disease management and provision of health services in rural Australia.
doi:10.1136/bmjopen-2013-004724
PMCID: PMC4025448  PMID: 24793254
Epidemiology
2.  Overcoming language barriers in community-based research with refugee and migrant populations: options for using bilingual workers 
Background
Although the challenges of working with culturally and linguistically diverse groups can lead to the exclusion of some communities from research studies, cost effective strategies to encourage access and promote cross-cultural linkages between researchers and ethnic minority participants are essential to ensure their views are heard and their health needs identified. Using bilingual research assistants is one means to achieve this. In a study exploring alcohol and other drug service use by migrant women in Western Australia, bilingual workers were used to assist with participant recruitment and administration of a survey to 268 women who spoke more than 40 different languages.
Discussion
Professional interpreters, bilingual students, bilingual overseas-trained health professionals and community sector bilingual workers were used throughout the research project. For the initial qualitative phase, professional interpreters were used to conduct interviews and focus group sessions, however scheduling conflicts, inflexibility, their inability to help with recruitment and the expense prompted exploration of alternative options for interview interpreting in the quantitative component of the study. Bilingual mature-age students on work placement and overseas-trained health professionals provided good entry into their different community networks and successfully recruited and interviewed participants, often in languages with limited interpreter access. Although both groups required training and supervision, overseas-trained health professionals often had existing research skills, as well as understanding of key issues such as confidentiality and referral processes. Strategies to minimise social desirability bias and the need to set boundaries were discussed during regular debriefing sessions. Having a number of workers recruiting participants also helped minimise the potential for selection bias. The practical and educational experience gained by the bilingual workers was regarded as capacity building and a potentially valuable community resource for future health research projects.
Summary
The use of bilingual workers was key to the feasibility and success of the project. The most successful outcomes occurred with students and overseas-trained health professionals who had good community networks for recruitment and the required linguistic skills. By describing the advantages and disadvantages encountered when working with bilingual workers, we offer practical insights to assist other researchers working with linguistically diverse groups.
doi:10.1186/1472-698X-14-11
PMCID: PMC4016643  PMID: 24725431
Bilingual workers; Cross cultural research; Migrants; Refugees; Communication; Interpreting
3.  Making progress: the role of cancer councils in Australia in indigenous cancer control 
BMC Public Health  2014;14:347.
Background
Indigenous Australians have poorer outcomes from cancer for a variety of reasons including poorer participation in screening programs, later diagnosis, higher rates of cancer with poor prognosis and poorer uptake and completion of treatment. Cancer prevention and support for people with cancer is part of the core business of the State and Territory Cancer Councils. To support sharing of lessons learned, this paper reports an environmental scan undertaken in 2010 in cancer councils (CCs) nationwide that aimed to support Indigenous cancer control.
Methods
The methods replicated the approach used in a 2006 environmental scan of Indigenous related activity in CCs. The Chief Executive Officer of each CC nominated individuals for interview. Interviews explored staffing, projects, programs and activities to progress cancer control issues for Indigenous Australians, through phone or face-to-face interviews. Reported initiatives were tabulated using predetermined categories of activity and summaries were returned to interviewees, the Aboriginal and Torres Strait Islander Subcommittee and Chief Executive Officers for verification.
Results
All CCs participated and modest increases in activity had occurred in most states since 2006 through different means. Indigenous staff numbers were low and no Indigenous person had yet been employed in smaller CCs; no CC had an Indigenous Board member and efforts at capacity building were often directed outside of the organisation. Developing partnerships with Indigenous organisations were ongoing. Acknowledgement and specific mention of Indigenous people in policy was increasing. Momentum increased following the establishment of a national subcommittee which increased the profile of Indigenous issues and provided collegial and practical support for those committed to reducing Indigenous cancer disparities. Government funding of “Closing the Gap” and research in the larger CCs have been other avenues for increasing knowledge and activity in Indigenous cancer control.
Conclusions
This environmental scan measured progress, allowed sharing of information and provided critical assessment of progress across areas of importance for increasing Indigenous cancer control. Structured examination of policies, institutional support systems, programs and interventions is a useful means of highlighting opportunities for progress with minority groups relevant for many organisations. Progress has occurred with momentum likely to increase in the future and benefit from commitment to long-term monitoring and sharing of achievements.
doi:10.1186/1471-2458-14-347
PMCID: PMC4004461  PMID: 24725974
Cancer; Aboriginal; Indigenous; Environmental scan; Delivery of health care/*organization & administration; Health services accessibility; Neoplasms/*prevention & control
4.  Exploring Australian Aboriginal Women’s experiences of menopause: a descriptive study 
BMC Women's Health  2014;14:47.
Background
Despite extensive literature demonstrating differing experiences in menopause around the world, documentation of the experience of menopause in Australian Aboriginal women is scarce, and thus their menopausal experience is relatively unknown. This study aimed to understand Australian Aboriginal women’s understanding and experience of menopause and its impact on their lives.
Methods
The study was an exploratory qualitative study. Twenty-five Aboriginal women were recruited from a regional centre in the Mid-West region of Western Australia using opportunistic and snowballing sampling. Interviews and focus group discussions were undertaken from February 2011 to February 2012 using open-ended questioning with a yarning technique. Thematic analysis was undertaken of the transcribed interviews.
Results
A number of themes were revealed. These related to the language used, meanings and attitudes to menopause, symptoms experienced, the role of men, a lack of understanding, coping mechanisms and the attribution of menopausal changes to something else. The term “change of life” was more widely recognised and signified the process of ageing, and an associated gain of respect in the local community. A fear of menopausal symptoms or uncertainty about their origin was also common. Overall, many women reported insufficient understanding and a lack of available information to assist them and their family to understand the transition.
Conclusion
There are similarities between Aboriginal and non-Aboriginal experiences of menopause, including similar symptom profiles. The current language used within mainstream health settings may not be appropriate to this population if it fails to recognise the importance of language and reflect the attributed meaning of menopause. The fear of symptoms and uncertainty of their relationship to menopause demonstrated a need for more information which has not adequately been supplied to Australian Aboriginal women through current services. While this study is with a select population of Aboriginal Australian women, it reveals the importance of acknowledging differences, particularly in use of language to convey ideas and support Aboriginal women experiencing menopause.
doi:10.1186/1472-6874-14-47
PMCID: PMC3994473  PMID: 24646300
Menopause; Change of life; Indigenous; Aboriginal; Australia; Attitudes; Perceptions; Experiences; Culture
5.  Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers 
Background
Aboriginal 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).
Methods
A 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.
Results
CSPs’ 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.
Conclusion
Individual 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.
doi:10.1186/1472-6963-13-460
PMCID: PMC3835135  PMID: 24188503
Aboriginal; Indigenous; Cancer; Communication; Health service provider; Cancer service provider
6.  Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives 
BMC Palliative Care  2013;12:26.
Background
Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.
Methods
In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.
Results
Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.
Conclusion
Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.
doi:10.1186/1472-684X-12-26
PMCID: PMC3729490  PMID: 23875957
Palliative care; End of life care; Aboriginal; Indigenous; Cultural safety; Australia
7.  Aboriginal-mainstream partnerships: exploring the challenges and enhancers of a collaborative service arrangement for Aboriginal clients with substance use issues 
Background
Partnerships 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.
Methods
Sixteen 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 & discussion
Communication 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.
Conclusion
While 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.
doi:10.1186/1472-6963-13-12
PMCID: PMC3547814  PMID: 23305201
Aboriginal; Mainstream; Vulnerable populations; Partnerships; Health services
8.  Menopause and the influence of culture: another gap for Indigenous Australian women? 
BMC Women's Health  2012;12:43.
Background
There is great variation in experience of menopause in women around the world. The purpose of this study was to review current understanding of Australian Aboriginal and Torres Strait Islander (Indigenous) women’s experiences of menopause. The literature pertaining to the perception, significance and experience of menopause from a number of cultural groups around the world has been included to provide context for why Indigenous women’s experience might be important for their health and differ from that reported in other studies of Australian women and menopause.
Methods
A search of databases including Ovid Medline, Pubmed, Web of Science, AUSThealth, AMED, EMBASE, Global Health and PsychINFO was undertaken from January 2011 to April 2011 using the search terms menopause, Indigenous, Aboriginal, attitudes, and perceptions and repeated in September 2012.
Results
Considerable research shows significant variation across cultures in the menopausal experience. Biological, psychological, social and cultural factors are associated with either positive or negative attitudes, perceptions or experiences of menopause in various cultures. Comparative international literature shows that neither biological nor social factors alone are sufficient to explain the variation in experiences of the menopausal transition. However, a strong influence of culture on the menopause experience can be found. The variation in women’s experience of menopause indicates that different cultural groups of women may have different understandings and needs during the menopausal transition. While considerable literature exists for Australian women as a whole, there has been little investigation of Australian Indigenous women, with only two research studies related to Indigenous women’s experiences of menopause identified.
Conclusions
Differences in biocultural experience of menopause around the world suggest the importance of biocultural research. For the Indigenous women of Australia, the relative contribution of culture, social disadvantage and poor general health compared with non-Indigenous women to the experience of menopause is unknown. As such, further research and understanding of the experience of Indigenous women around Australia is needed. This information could assist individuals, families, cultural groups and healthcare providers to enhance management and support for Indigenous Australian women.
doi:10.1186/1472-6874-12-43
PMCID: PMC3554544  PMID: 23234340
Menopause; Indigenous; Aboriginal Attitudes; Perceptions; Experiences; Culture
9.  The quality of Indigenous identification in administrative health data in Australia: insights from studies using data linkage 
Background
Missing or incorrect Indigenous status in health records hinders monitoring of Indigenous health indicators. Linkage of administrative data has been used to improve the ascertainment of Indigenous status. Data linkage was pioneered in Western Australia (WA) and is now being used in other Australian states. This systematic review appraises peer-reviewed Australian studies that used data linkage to elucidate the impact of under-ascertainment of Indigenous status on health indicators.
Methods
A PubMed search identified eligible studies that used Australian linked data to interrogate Indigenous identification using more than one identifier and interrogated the impact of the different identifiers on estimation of Indigenous health indicators.
Results
Eight papers were included, five from WA and three from New South Wales (NSW). The WA papers included a self-identified Indigenous community cohort and showed improved identification in hospital separation data after 2000. In CVD hospitalised patients (2000–05), under-identification was greater in urban residents, older people and socially more advantaged Indigenous people, with varying algorithms giving different estimates of under-count. Age-standardised myocardial infarction incidence rates (2000–2004) increased by about 10%-15% with improved identification. Under-ascertainment of Indigenous identification overestimated secular improvements in life expectancy and mortality whereas correcting infectious disease notifications resulted in lower Indigenous/ non-Indigenous rate ratios. NSW has a history of poor Indigenous identification in administrative data systems, but the NSW papers confirmed the usefulness of data linkage for improving Indigenous identification and the potential for very different estimates of Indigenous disease indicators depending upon the algorithm used for identification.
Conclusions
Under-identification of Indigenous status must be addressed in health analyses concerning Indigenous health differentials – they cannot be ignored or wished away. This problem can be substantially diminished through data linkage. Under-identification of Indigenous status impacts differently in different disease contexts, generally resulting in under-estimation of absolute and relative Indigenous health indicators, but may perversely overestimate Indigenous rates and differentials in the setting of stigma-associated conditions such as sexually-transmitted and blood-borne virus infections. Under-numeration in Census surveys also needs consideration to address the added problem of denominator undercounts.
doi:10.1186/1472-6947-12-133
PMCID: PMC3536611  PMID: 23157943
10.  Heart failure among Indigenous Australians: a systematic review 
Background
Cardiovascular diseases contribute substantially to the poor health and reduced life expectancy of Indigenous Australians. Heart failure is a common, disabling, progressive and costly complication of these disorders. The epidemiology of heart failure and the adequacy of relevant health service provision in Indigenous Australians are not well delineated.
Methods
A systematic search of the electronic databases PubMed, Embase, Web of Science, Cinahl Plus, Informit and Google Scholar was undertaken in April 2012 for peer-reviewed journal articles relevant to the topic of heart failure in Indigenous Australians. Additionally, a website search was done to identify other pertinent publications, particularly government reports.
Results
There was a paucity of relevant peer-reviewed research, and government reports dominated the results. Ten journal articles, 1 published conference abstract and 10 reports were eligible for inclusion. Indigenous Australians reportedly have higher morbidity and mortality from heart failure than their non-Indigenous counterparts (age-standardised prevalence ratio 1.7; age-standardised hospital separation ratio ≥3; crude per capita hospital expenditure ratio 1.58; age-adjusted mortality ratio >2). Despite the evident disproportionate burden of heart failure in Indigenous Australians, the accuracy of estimation from administrative data is limited by poor indigenous identification, inadequate case ascertainment and exclusion of younger subjects from mortality statistics. A recent journal article specifically documented a high prevalence of heart failure in Central Australian Aboriginal adults (5.3%), noting frequent undiagnosed disease. One study examined barriers to health service provision for Indigenous Australians in the context of heart failure.
Conclusions
Despite the shortcomings of available published data, it is clear that Indigenous Australians have an excess burden of heart failure. Emerging data suggest that undiagnosed cases may be common in this population. In order to optimise management and to inform policy, high quality research on heart failure in Indigenous Australians is required to delineate accurate epidemiological indicators and to appraise health service provision.
doi:10.1186/1471-2261-12-99
PMCID: PMC3521206  PMID: 23116367
Heart failure; Australia; Indigenous; Aboriginal; Torres Strait Islander; Cardiac failure; Cardiovascular; Heart disease
11.  Colorectal cancer screening knowledge, attitudes and behavioural intention among Indigenous Western Australians 
BMC Public Health  2012;12:528.
Background
Indigenous Australians are significantly less likely to participate in colorectal cancer (CRC) screening compared to non-Indigenous people. This study aimed to identify important factors influencing the decision to undertake screening using Faecal Occult Blood Testing (FOBT) among Indigenous Australians. Very little evidence exists to guide interventions and programmatic approaches for facilitating screening uptake in this population in order to reduce the disparity in colorectal cancer outcomes.
Methods
Interviewer-administered surveys were carried out with a convenience sample (n = 93) of Indigenous Western Australians between November 2009-March 2010 to assess knowledge, awareness, attitudes and behavioural intent in regard to CRC and CRC screening.
Results
Awareness and knowledge of CRC and screening were low, although both were significantly associated with exposure to media advertising (p = 0.008; p < 0.0001). Nearly two-thirds (63%; 58/92) of respondents reported intending to participate in screening, while a greater proportion (84%; 77/92) said they would participate on a doctor’s recommendation. Multivariate analysis with logistic regression demonstrated that independent predictors of screening intention were, greater perceived self-efficacy (OR = 19.8, 95% CI = 5.5-71.8), a history of cancer screening participation (OR = 6.8, 95% CI = 2.0-23.3) and being aged 45 years or more (OR = 4.5, 95% CI = 1.2-16.5). A higher CRC knowledge score (medium vs. low: OR = 9.9, 95% CI = 2.4-41.3; high vs. low: 13.6, 95% CI = 3.4-54.0) and being married or in a de-facto relationship (OR = 6.9, 95% CI = 2.1-22.5) were also identified as predictors of intention to screen with FOBT.
Conclusions
Improving CRC related knowledge and confidence to carry out the FOBT self-screening test through education and greater promotion of screening has the potential to enhance Indigenous participation in CRC screening. These findings should guide the development of interventions to encourage screening uptake and reduce bowel cancer related deaths among Indigenous Australians.
doi:10.1186/1471-2458-12-528
PMCID: PMC3481427  PMID: 22809457
12.  Reducing the health disparities of Indigenous Australians: time to change focus 
Background
Indigenous peoples have worse health than non-Indigenous, are over-represented amongst the poor and disadvantaged, have lower life expectancies, and success in improving disparities is limited. To address this, research usually focuses on disadvantaged and marginalised groups, offering only partial understanding of influences underpinning slow progress. Critical analysis is also required of those with the power to perpetuate or improve health inequities. In this paper, using Australia as a case example, we explore the effects of ‘White’, Anglo-Australian cultural dominance in health service delivery to Indigenous Australians. We address the issue using race as an organising principle, underpinned by relations of power.
Methods
Interviews with non-Indigenous medical practitioners in Western Australia with extensive experience in Indigenous health encouraged reflection and articulation of their insights into factors promoting or impeding quality health care to Indigenous Australians. Interviews were audio-taped and transcribed. An inductive, exploratory analysis identified key themes that were reviewed and interrogated in light of existing literature on health care to Indigenous people, race and disadvantage. The researchers’ past experience, knowledge and understanding of health care and Indigenous health assisted with data interpretation. Informal discussions were also held with colleagues working professionally in Indigenous policy, practice and community settings.
Results
Racism emerged as a key issue, leading us to more deeply interrogate the role ‘Whiteness’ plays in Indigenous health care. While Whiteness can refer to skin colour, it also represents a racialized social structure where Indigenous knowledge, beliefs and values are subjugated to the dominant western biomedical model in policy and practice. Racism towards Indigenous patients in health services was institutional and interpersonal. Internalised racism was manifest when Indigenous patients incorporated racist attitudes and beliefs into their lived experience, lowering expectations and their sense of self-worth.
Conclusions
Current health policies and practices favour standardised care where the voice of those who are marginalised is often absent. Examining the effectiveness of such models in reducing health disparities requires health providers to critically reflect on whether policies and practices promote or compromise Indigenous health and wellbeing - an important step in changing the discourse that places Indigenous people at the centre of the problem.
doi:10.1186/1472-6963-12-151
PMCID: PMC3431273  PMID: 22682494
13.  Between a rock and a hard place: stigma and the desire to have children among people living with HIV in northern Uganda 
Background
HIV-related stigma, among other factors, has been shown to have an impact on the desire to have children among people living with HIV (PLHIV). Our objective was to explore the experiences of HIV-related stigma among PLHIV in post-conflict northern Uganda, a region of high HIV prevalence, high infant and child mortality and low contraception use, and to describe how stigma affected the desires of PLHIV to have children in the future.
Methods
Semi-structured interviews were conducted with 26 PLHIV in Gulu district, northern Uganda. The interviews, conducted in Luo, the local language, were audio recorded, transcribed and then translated into English. Thematic data analysis was undertaken using NVivo8 and was underpinned by the “Conceptual Model of HIV/AIDS Stigma”.
Results
HIV-related stigma continues to affect the quality of life of PLHIV in Gulu district, northern Uganda, and also influences PLHIV's desire to have children. PLHIV in northern Uganda continue to experience stigma in various forms, including internal stigma and verbal abuse from community members. While many PLHIV desire to have children and are strongly influenced by several factors including societal and cultural obligations, stigma and discrimination also affect this desire. Several dimensions of stigma, such as types of stigma (received, internal and associated stigma), stigmatizing behaviours (abusing and desertion) and agents of stigmatization (families, communities and health systems), either directly, or indirectly, enhanced or reduced PLHIV's desire to have more children.
Conclusion
The social-cultural context within which PLHIV continue to desire to have children must be better understood by all health professionals who hope to improve the quality of PLHIV's lives. By delineating the stigma process, the paper proposes interventions for reducing stigmatization of PLHIV in northern Uganda in order to improve the quality of life and health outcomes for PLHIV and their children.
doi:10.7448/IAS.15.2.17421
PMCID: PMC3499804  PMID: 22713256
HIV; stigma; fertility desire; northern Uganda
14.  Care seeking for fatal illness episodes in Neonates: a population-based study in rural Bangladesh 
BMC Pediatrics  2011;11:88.
Background
Poor neonatal health is a major contributor to under-five mortality in developing countries. A major constraint to effective neonatal survival programme has been the lack of population level data in developing countries. This study investigated the consultation patterns of caregivers during neonatal fatal illness episodes in the rural Matlab sub-district of eastern Bangladesh.
Methods
Neonatal deaths were identified through a population-based demographic surveillance system in Matlab ICDDR,B maternal and child health (MCH) project area and an adjoining government service area. Trained project staff administered a structured questionnaire on care seeking to mothers at home who had experienced a neonatal death. Univariate, bivariate and binary multivariate logistic regressions were performed to describe care seeking during the fatal illness episode.
Results
Of the 365 deaths recorded during 2003 and 2004, 84% died in the early (0-7 days) neonatal period, with the remaining deaths occurring over the subsequent 8 to 28 days. The first resort of care by parents was a qualified doctor or paramedic in 37% of cases, followed by traditional and unqualified health care providers in 25%, while 38% sought no care. Thus, almost two thirds (63%) of neonates who died received only traditional and unqualified care or no care at all during their final illness episode. About 22% sought care from more than one provider, including 6% from 3 or more providers. Such plurality in care seeking was more likely among male infants, in the late neonatal period, and in the MCH project area.
Conclusions
The high proportion of neonatal deaths that had received traditional care or no medical care in a rural area of Bangladesh highlights the need to develop community awareness about prompt medical care seeking for neonatal illnesses and to improve access to effective health care. Integration of traditional care providers into mainstream health programs should also be considered.
doi:10.1186/1471-2431-11-88
PMCID: PMC3204238  PMID: 21999253
15.  Family planning among people living with HIV in post-conflict Northern Uganda: A mixed methods study 
Conflict and Health  2011;5:18.
Background
Northern Uganda experienced severe civil conflict for over 20 years and is also a region of high HIV prevalence. This study examined knowledge of, access to, and factors associated with use of family planning services among people living with HIV (PLHIV) in this region.
Methods
Between February and May 2009, a total of 476 HIV clinic attendees from three health facilities in Gulu, Northern Uganda, were interviewed using a structured questionnaire. Semi-structured interviews were conducted with another 26 participants. Factors associated with use of family planning methods were examined using logistic regression methods, while qualitative data was analyzed within a social-ecological framework using thematic analysis.
Results
There was a high level of knowledge about family planning methods among the PLHIV surveyed (96%). However, there were a significantly higher proportion of males (52%) than females (25%) who reported using contraception. Factors significantly associated with the use of contraception were having ever gone to school [adjusted odds ratio (AOR) = 4.32, 95% confidence interval (CI): 1.33-14.07; p = .015], discussion of family planning with a health worker (AOR = 2.08, 95% CI: 1.01-4.27; p = .046), or with one's spouse (AOR = 5.13, 95% CI: 2.35-11.16; p = .000), not attending the Catholic-run clinic (AOR = 3.67, 95% CI: 1.79-7.54; p = .000), and spouses' non-desire for children (AOR = 2.19, 95% CI: 1.10-4.36; p = .025). Qualitative data revealed six major factors influencing contraception use among PLHIV in Gulu including personal and structural barriers to contraceptive use, perceptions of family planning, decision making, covert use of family planning methods and targeting of women for family planning services.
Conclusions
Multilevel, context-specific health interventions including an integration of family planning services into HIV clinics could help overcome some of the individual and structural barriers to accessing family planning services among PLHIV in Gulu. The integration also has the potential to reduce HIV incidence in this post-conflict region.
doi:10.1186/1752-1505-5-18
PMCID: PMC3191370  PMID: 21933403
HIV/AIDS; contraception; mixed methods; Northern Uganda
16.  Sampling challenges in a study examining refugee resettlement 
Background
As almost half of all refugees currently under United Nations protection are from Afghanistan or Iraq and significant numbers have already been resettled outside the region of origin, it is likely that future research will examine their resettlement needs. A number of methodological challenges confront researchers working with culturally and linguistically diverse groups; however, few detailed articles are available to inform other studies. The aim of this paper is to outline challenges with sampling and recruitment of socially invisible refugee groups, describing the method adopted for a mixed methods exploratory study assessing mental health, subjective wellbeing and resettlement perspectives of Afghan and Kurdish refugees living in New Zealand and Australia. Sampling strategies used in previous studies with similar refugee groups were considered before determining the approach to recruitment
Methods
A snowball approach was adopted for the study, with multiple entry points into the communities being used to choose as wide a range of people as possible to provide further contacts and reduce selection bias. Census data was used to assess the representativeness of the sample.
Results
A sample of 193 former refugee participants was recruited in Christchurch (n = 98) and Perth (n = 95), 47% were of Afghan and 53% Kurdish ethnicity. A good gender balance (males 52%, females 48%) was achieved overall, mainly as a result of the sampling method used. Differences in the demographic composition of groups in each location were observed, especially in relation to the length of time spent in a refugee situation and time since arrival, reflecting variations in national humanitarian quota intakes. Although some measures were problematic, Census data comparison to assess reasonable representativeness of the study sample was generally reassuring.
Conclusions
Snowball sampling, with multiple initiation points to reduce selection bias, was necessary to locate and identify participants, provide reassurance and break down barriers. Personal contact was critical for both recruitment and data quality, and highlighted the importance of interviewer cultural sensitivity. Cross-national comparative studies, particularly relating to refugee resettlement within different policy environments, also need to take into consideration the differing pre-migration experiences and time since arrival of refugee groups, as these can add additional layers of complexity to study design and interpretation.
doi:10.1186/1472-698X-11-2
PMCID: PMC3065432  PMID: 21406104
17.  Not just bricks and mortar: planning hospital cancer services for Aboriginal people 
BMC Research Notes  2011;4:62.
Background
Aboriginal people in Australia experience higher mortality from cancer compared with non-Aboriginal Australians, despite an overall lower incidence. A notable contributor to this disparity is that many Aboriginal people do not take up or continue with cancer treatment which almost always occurs within major hospitals.
Thirty in-depth interviews with urban, rural and remote Aboriginal people affected by cancer were conducted between March 2006 and September 2007. Interviews explored participants' beliefs about cancer and experiences of cancer care and were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. Information from interviews relevant to hospital services including and building design was extracted.
Findings
Relationships and respect emerged as crucial considerations of participants although many aspects of the hospital environment were seen as influencing the delivery of care. Five themes describing concerns about the hospital environment emerged: (i) being alone and lost in a big, alien and inflexible system; (ii) failure of open communication, delays and inefficiency in the system; (iii) practicalities: costs, transportation, community and family responsibilities; (iv) the need for Aboriginal support persons; and (v) connection to the community.
Conclusions
Design considerations and were identified but more important than the building itself was the critical need to build trust in health services. Promotion of cultural safety, support for Aboriginal family structures and respecting the importance of place and community to Aboriginal patients are crucial in improving cancer outcomes.
doi:10.1186/1756-0500-4-62
PMCID: PMC3068108  PMID: 21401923
18.  Smoking Cessation in Indigenous Populations of Australia, New Zealand, Canada, and the United States: Elements of Effective Interventions 
Indigenous people throughout the world suffer a higher burden of disease than their non-indigenous counterparts contributing to disproportionate rates of disability. A significant proportion of this disability can be attributed to the adverse effects of smoking. In this paper, we aimed to identify and discuss the key elements of individual-level smoking cessation interventions in indigenous people worldwide. An integrative review of published peer-reviewed literature was conducted. Literature on smoking cessation interventions in indigenous people was identified via search of electronic databases. Documents were selected for review if they were published in a peer-reviewed journal, written in English, published from 1990–2010, and documented an individual-level intervention to assist indigenous people to quit smoking. Studies that met inclusion criteria were limited to Australia, New Zealand, Canada, and the USA, despite seeking representation from other indigenous populations. Few interventions tailored for indigenous populations were identified and the level of detail included in evaluation reports was variable. Features associated with successful interventions were integrated, flexible, community-based approaches that addressed known barriers and facilitators to quitting smoking. More tailored and targeted approaches to smoking cessation interventions for indigenous populations are required. The complexity of achieving smoking cessation is underscored as is the need to collaboratively develop interventions that are acceptable and appropriate to local populations.
doi:10.3390/ijerph8020388
PMCID: PMC3084468  PMID: 21556193
tobacco; smoking cessation; indigenous; interventions
19.  Selecting instruments for assessing psychological wellbeing in Afghan and Kurdish refugee groups 
BMC Research Notes  2010;3:237.
Background
Afghan and Iraqi refugees comprise nearly half of all those currently under United Nations protection. As many of them will eventually be resettled in countries outside the region of origin, their long term health and settlement concerns are of relevance to host societies, and will be a likely focus for future research. Since Australia and New Zealand have both accepted refugees for many years and have dedicated, but different settlement and immigration policies, a study comparing the resettlement of two different refugee groups in these countries was undertaken. The purpose of this article is to describe the instrument selection for this study assessing mental health and psychological well being with Afghan and Kurdish former refugees, in particular to address linguistic considerations and translated instrument availability. A summary of instruments previously used with refugee and migrant groups from the Middle East region is presented to assist other researchers, before describing the three instruments ultimately selected for the quantitative component of our study.
Findings
The Kessler-10 Psychological Distress Scale (K10), General Perceived Self-Efficacy Scale (GPSE), and Personal Well-Being Index (PWI) all showed good reliability (Cronbach's alphas of 0.86, 0.89 and 0.83 respectively for combined language versions) and ease of use even for pre-literate participants, with the sample of 193 refugees, although some concepts in the GPSE proved problematic for a small number of respondents. Farsi was the language of choice for the majority of Afghan participants, while most of the Kurds chose to complete English versions in addition to Farsi. No one used Arabic or Turkish translations. Participants settled less than ten years were more likely to complete questionnaires in Farsi. Descriptive summary statistics are presented for each instrument with results split by gender, refugee group and language version completed.
Conclusion
This paper discusses instrument selection for Farsi and Arabic speaking refugee participants from the Middle East and Afghanistan, concluding that the Kessler-10, GPSE scale and PWI were suitable for use with these groups. Suitable language translations are freely available. Our experience with these instruments may help inform other studies with these vulnerable groups.
doi:10.1186/1756-0500-3-237
PMCID: PMC2949661  PMID: 20825681
20.  A comparison of physicians and medical assistants in interpreting verbal autopsy interviews for allocating cause of neonatal death in Matlab, Bangladesh: can medical assistants be considered an alternative to physicians? 
Objective
This study assessed the agreement between medical physicians in their interpretation of verbal autopsy (VA) interview data for identifying causes of neonatal deaths in rural Bangladesh.
Methods
The study was carried out in Matlab, a rural sub-district in eastern Bangladesh. Trained persons conducted the VA interview with the mother or another family member at the home of the deceased. Three physicians and a medical assistant independently reviewed the VA interviews to assign causes of death using the International Classification of Diseases - Tenth Revision (ICD-10) codes. A physician assigned cause was decided when at least two physicians agreed on a cause of death. Cause-specific mortality fraction (CSMF), kappa (k) statistic, sensitivity, specificity, and positive predictive values were applied to compare agreement between the reviewers.
Results
Of the 365 neonatal deaths reviewed, agreement on a direct cause of death was reached by at least two physicians in 339 (93%) of cases. Physician and medical assistant reviews of causes of death demonstrated the following levels of diagnostic agreement for the main causes of deaths: for birth asphyxia the sensitivity was 84%, specificity 93%, and kappa 0.77. For prematurity/low birth weight, the sensitivity, specificity, and kappa statistics were, respectively, 53%, 96%, and 0.55, for sepsis/meningitis they were 48%, 98%, and 0.53, and for pneumonia they were 75%, 94%, and 0.51.
Conclusion
This study revealed a moderate to strong agreement between physician- assigned and medical assistant- assigned major causes of neonatal death. A well-trained medical assistant could be considered an alternative for assigning major causes of neonatal deaths in rural Bangladesh and in similar settings where physicians are scarce and their time costs more. A validation study with medically confirmed diagnosis will improve the performance of VA for assigning cause of neonatal death.
doi:10.1186/1478-7954-8-23
PMCID: PMC2933579  PMID: 20712906
21.  Australia's National Bowel Cancer Screening Program: does it work for Indigenous Australians? 
BMC Public Health  2010;10:373.
Background
Despite a lower incidence of bowel cancer overall, Indigenous Australians are more likely to be diagnosed at an advanced stage when prognosis is poor. Bowel cancer screening is an effective means of reducing incidence and mortality from bowel cancer through early identification and prompt treatment. In 2006, Australia began rolling out a population-based National Bowel Cancer Screening Program (NBCSP) using the Faecal Occult Blood Test. Initial evaluation of the program revealed substantial disparities in bowel cancer screening uptake with Indigenous Australians significantly less likely to participate in screening than the non-Indigenous population.
This paper critically reviews characteristics of the program which may contribute to the discrepancy in screening uptake, and includes an analysis of organisational, structural, and socio-cultural barriers that play a part in the poorer participation of Indigenous and other disadvantaged and minority groups.
Methods
A search was undertaken of peer-reviewed journal articles, government reports, and other grey literature using electronic databases and citation snowballing. Articles were critically evaluated for relevance to themes that addressed the research questions.
Results
The NBCSP is not reaching many Indigenous Australians in the target group, with factors contributing to sub-optimal participation including how participants are selected, the way the screening kit is distributed, the nature of the test and comprehensiveness of its contents, cultural perceptions of cancer and prevailing low levels of knowledge and awareness of bowel cancer and the importance of screening.
Conclusions
Our findings suggest that the population-based approach to implementing bowel cancer screening to the Australian population unintentionally excludes vulnerable minorities, particularly Indigenous and other culturally and linguistically diverse groups. This potentially contributes to exacerbating the already widening disparities in cancer outcomes that exist among Indigenous Australians. Modifications to the program are recommended to facilitate access and participation by Indigenous and other minority populations. Further research is also needed to understand the needs and social and cultural sensitivities of these groups around cancer screening and inform alternative approaches to bowel cancer screening.
doi:10.1186/1471-2458-10-373
PMCID: PMC2915957  PMID: 20579344
22.  "If you don't believe it, it won't help you": use of bush medicine in treating cancer among Aboriginal people in Western Australia 
Background
Little is known about the use of bush medicine and traditional healing among Aboriginal Australians for their treatment of cancer and the meanings attached to it. A qualitative study that explored Aboriginal Australians' perspectives and experiences of cancer and cancer services in Western Australia provided an opportunity to analyse the contemporary meanings attached and use of bush medicine by Aboriginal people with cancer in Western Australia
Methods
Data collection occurred in Perth, both rural and remote areas and included individual in-depth interviews, observations and field notes. Of the thirty-seven interviews with Aboriginal cancer patients, family members of people who died from cancer and some Aboriginal health care providers, 11 participants whose responses included substantial mention on the issue of bush medicine and traditional healing were selected for the analysis for this paper.
Results
The study findings have shown that as part of their healing some Aboriginal Australians use traditional medicine for treating their cancer. Such healing processes and medicines were preferred by some because it helped reconnect them with their heritage, land, culture and the spirits of their ancestors, bringing peace of mind during their illness. Spiritual beliefs and holistic health approaches and practices play an important role in the treatment choices for some patients.
Conclusions
Service providers need to acknowledge and understand the existence of Aboriginal knowledge (epistemology) and accept that traditional healing can be an important addition to an Aboriginal person's healing complementing Western medical treatment regimes. Allowing and supporting traditional approaches to treatment reflects a commitment by modern medical services to adopting an Aboriginal-friendly approach that is not only culturally appropriate but assists with the cultural security of the service.
doi:10.1186/1746-4269-6-18
PMCID: PMC2902429  PMID: 20569478
23.  Are the processes recommended by the NHMRC for improving Cardiac Rehabilitation (CR) for Aboriginal and Torres Strait Islander people being implemented?: an assessment of CR Services across Western Australia 
Background
Cardiovascular disease is the major cause of premature death of Indigenous Australians, and despite evidence that cardiac rehabilitation (CR) and secondary prevention can reduce recurrent disease and deaths, CR uptake is suboptimal. The National Health and Medical Research Council (NHMRC) guidelines Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander peoples, published in 2005, provide checklists for services to assist them to reduce the service gap for Indigenous people. This study describes health professionals' awareness, implementation, and perspectives of barriers to implementation of these guidelines based on semi-structured interviews conducted between November 2007 and June 2008 with health professionals involved in CR within mainstream health services in Western Australia (WA). Twenty-four health professionals from 17 services (10 rural, 7 metropolitan) listed in the WA Directory of CR services were interviewed.
Results
The majority of respondents reported that they were unfamiliar with the NHMRC guidelines and as a consequence implementation of the recommendations was minimal and inconsistently applied. Respondents reported that they provided few in-patient CR-related services to Indigenous patients, services upon discharge were erratic, and they had few Indigenous-specific resources for patients. Issues relating to workforce, cultural competence, and service linkages emerged as having most impact on design and delivery of CR services for Indigenous people in WA.
Conclusions
This study has demonstrated limited awareness and poor implementation in WA of the recommendations of the NHMRC Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander Peoples: A Guide for Health Professionals. The disproportionate burden of CVD morbidity and mortality among Indigenous Australians mandates urgent attention to this problem and alternative approaches to CR delivery. Dedicated resources and alternative approaches to CR delivery for Indigenous Australians are needed.
doi:10.1186/1743-8462-6-29
PMCID: PMC2806388  PMID: 20042097
24.  Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding 
Background
Aboriginal Australians experience poorer outcomes, and are 2.5 times more likely to die from cancer than non-Aboriginal people, even after adjustment for stage of diagnosis, cancer treatment and comorbidities. They are also less likely to present early as a result of symptoms and to access treatment. Psycho-social factors affect Aboriginal people's willingness and ability to participate in cancer-related screening and treatment services, but little exploration of this has occurred within Australia to date. The current research adopted a phenomenological qualitative approach to understand and explore the lived experiences of Aboriginal Australians with cancer and their beliefs and understanding around this disease in Western Australia (WA). This paper details considerations in the design and process of conducting the research.
Methods/Design
The National Health and Medical Research Council (NHMRC) guidelines for ethical conduct of Aboriginal research were followed. Researchers acknowledged the past negative experiences of Aboriginal people with research and were keen to build trust and relationships prior to conducting research with them. Thirty in-depth interviews with Aboriginal people affected by cancer and twenty with health service providers were carried out in urban, rural and remote areas of WA. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. Participants' narratives were divided into broad categories to allow identification of key themes and discussed by the research team.
Discussion and conclusion
Key issues specific to Aboriginal research include the need for the research process to be relationship-based, respectful, culturally appropriate and inclusive of Aboriginal people. Researchers are accountable to both participants and the wider community for reporting their findings and for research translation so that the research outcomes benefit the Aboriginal community. There are a number of factors that influence whether the desired level of engagement can be achieved in practice. These include the level of resourcing for the project and the researchers' efforts to ensure dissemination and research translation; and the capacity of the Aboriginal community to engage with research given other demands upon their time.
doi:10.1186/1471-2288-9-60
PMCID: PMC2743702  PMID: 19674484
25.  Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services 
Background
Despite a lower overall incidence, Aboriginal Australians experience poorer outcomes from cancer compared with the non-Aboriginal population as manifested by higher mortality and lower 5-year survival rates. Lower participation in screening, later diagnosis of cancer, poor continuity of care, and poorer compliance with treatment are known factors contributing to this poor outcome. Nevertheless, many deficits remain in understanding the underlying reasons, with the recommendation of further exploration of Aboriginal beliefs and perceptions of cancer to help understand their care-seeking behavior. This could assist with planning and delivery of more effective interventions and better services for the Aboriginal population. This research explored Western Australian (WA) Aboriginal peoples' perceptions, beliefs and understanding of cancer.
Methods
A total of 37 Aboriginal people from various geographical areas within WA with a direct or indirect experience of cancer were interviewed between March 2006 and September 2007. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. A social constructionist framework provided a theoretical basis for analysis. Interpretation occurred within the research team with member checking and the involvement of an Aboriginal Reference Group assisting with ensuring validity and reliability.
Results
Outcomes indicated that misunderstanding, fear of death, fatalism, shame, preference for traditional healing, beliefs such as cancer is contagious and other spiritual issues affected their decisions around accessing services. These findings provide important information for health providers who are involved in cancer-related service delivery.
Conclusion
These underlying beliefs must be specifically addressed to develop appropriate educational, screening and treatment approaches including models of care and support that facilitate better engagement of Indigenous people. Models of care and support that are more culturally-friendly, where health professionals take account of both Indigenous and Western beliefs about health and the relationship between these, and which engage and include Indigenous people need to be developed. Cultural security, removing system barriers and technical/scientific excellence are all important to ensure Indigenous people utilise healthcare to realise the benefits of modern cancer treatments.
doi:10.1186/1472-6963-9-132
PMCID: PMC2731745  PMID: 19643031

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