Towards understanding disparities in cancer outcomes for Aboriginal Australians: exploring Aboriginal perceptions and experiences of cancer in Western Australia

Cancer has become one of the major chronic diseases among Aboriginal and Torres Strait Islander people of Australia, and was declared a health priority in the National Aboriginal and Torres Strait Islander Health Strategy in 2001. Since then efforts have been instigated to improve the epidemiological information with regard to cancer among Aboriginal Australians in several jurisdictions. Specific issues related to cancer have been identified. Aboriginal Australians compared with non-Aboriginal people have higher occurrence of preventable cancers and are less likely to access cancer screening, are diagnosed at a more advanced stage, have poor continuity of care, lower compliance with treatment and lower five-year survival rates. Several risk factors for higher incidence of some cancers have also been noted. However, these do not adequately explain the reasons behind the delayed presentation, poor compliance and different treatment outcomes of cancer among Aboriginal Australians compared to the total population.To investigate and explore the variations in Aboriginal Australians’ beliefs, understanding and perceptions around cancer and their experiences with cancer services, an exploratory, in-depth qualitative study was undertaken in several locations of Western Australia (WA). This was done with a view to understanding Aboriginal decision-making processes in relation to accessing cancer care in WA. The study was approved by the Human Research Ethics Committee (HREC) of Curtin University, the Western Australian Aboriginal Health Information and Ethics Committee (WAAHIEC), the Royal Perth and Sir Charles Gairdner Hospitals, and by the local Aboriginal Community Controlled Health Services (ACCHS) in regions where the research was conducted.The study adopted a hermeneutic phenomenological research design and used qualitative methods. A hermeneutic phenomenological approach was chosen as this allowed understanding to emerge from the experiences of the participants through interpreting the situated meaning of humans in the world. The views of 30 Aboriginal participants – including patients, survivors and close family members who had lost someone to cancer in their families – were gathered through in-depth interviews. The fieldwork was conducted between March 2006 and September 2007. Interview data were tape-recorded, transcribed and analysed using NVivo7 Software. Thematic analysis was carried out from the information.The findings from the study suggest that many factors affect Aboriginal people’s willingness and ability to participate in cancer-related screening and treatment services. Late diagnoses were not only due to late presentations, as some delayed diagnoses occurred in patients who had regular contact with medical services. Participation in treatment is affected by beliefs and fatalistic attitudes towards cancer; limited understanding of the biomedical aspects of cancer and treatment processes; preference of Aboriginal people to use other approaches to healing such as traditional healers and bush medicine; unwillingness to be separated from family and country, and several infrastructural and logistical issues such as cost, transport and accommodation. It was found that fear of death, shame, beliefs such as cancer is contagious and other spiritual issues affected Aboriginal people’s decisions around accessing services.Moreover, miscommunication between Aboriginal patients and health care providers, lack of cultural security and culturally appropriate support services, lack of Aboriginal staff within the hospital to personally support Aboriginal patients, and the alienating environment of oncology treatment services were also mentioned as barriers. Factors important for effective patient-provider communication such as language, shared understanding, knowledge and use of medical terminology require particular attention. Lack of a reliable and on-going relationship with service providers also came up quite persistently. All of these issues were underpinned by the historical context which includes past discriminatory treatment and experiences of racism by Aboriginal people within mainstream medical institutions. These factors contribute to fear of the medical system, feelings of disempowerment, and mistrust towards the system which constrain Aboriginal participation in cancer treatment and other support services.The results of this study indicate that an understanding of the complex “layers” (from micro to macro) of factors and the interactions between them is required to elucidate Aboriginal people’s decision-making processes around engaging and participating in mainstream cancer services. This research identified gaps in knowledge and understanding and a lack of support services within Aboriginal communities.The findings from the research have been shared with relevant cancer-specific and Aboriginal Community Controlled Health Services with a vision to utilise the study outcomes for the benefit of Aboriginal individuals and communities. Aboriginal people were invited to be co-presenters and co-authors wherever the study findings were presented. An Indigenous Women’s Cancer Support Group (IWCSG) was established in Geraldton after the completion of fieldwork there. This support group has been working to raise awareness of cancer in local Aboriginal people.Some suggestions and recommendations to improve services and cancer outcomes for Aboriginal Australians came out of the study. These include: employment of Aboriginal staff in services and involvement of them in decision-making, maintenance of culturally sensitive, empathetic person-to-person contact, provision of infrastructural and institutional support to involve Aboriginal families within the treatment domain; acknowledgement of holistic concepts of health and well-being; and increase Aboriginal health literacy with regard to cancer

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

"If you don't believe it, it won't help you": use of bush medicine in treating cancer among Aboriginal people in Western Australia

<p>Abstract</p> <p>Background</p> <p>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</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p

Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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.</p> <p>Conclusion</p> <p>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.</p

Making progress: the role of cancer councils in Australia in indigenous cancer control

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

Factors contributing to delayed diagnosis of cancer among Aboriginal people in Australia: a qualitative study.

BACKGROUND/OBJECTIVES: Delayed presentation of symptomatic cancer is associated with poorer survival. Aboriginal patients with cancer have higher rates of distant metastases at diagnosis compared with non-Aboriginal Australians. This paper examined factors contributing to delayed diagnosis of cancer among Aboriginal Australians from patient and service providers' perspectives. METHODS: In-depth, open-ended interviews were conducted in two stages (2006-2007 and 2011). Inductive thematic analysis was assisted by use of NVivo looking around delays in presentation, diagnosis and referral for cancer. PARTICIPANTS: Aboriginal patients with cancer/family members (n=30) and health service providers (n=62) were recruited from metropolitan Perth and six rural/remote regions of Western Australia. RESULTS: Three broad themes of factors were identified: (1) Contextual factors such as intergenerational impact of colonisation and racism and socioeconomic deprivation have negatively impacted on Aboriginal Australians' trust of the healthcare professionals; (2) health service-related factors included low accessibility to health services, long waiting periods, inadequate numbers of Aboriginal professionals and high staff turnover; (3) patient appraisal of symptoms and decision-making, fear of cancer and denial of symptoms were key reasons patients procrastinated in seeking help. Elements of shame, embarrassment, shyness of seeing the doctor, psychological 'fear of the whole health system', attachment to the land and 'fear of leaving home' for cancer treatment in metropolitan cities were other deterrents for Aboriginal people. Manifestation of masculinity and the belief that 'health is women's domain' emerged as a reason why Aboriginal men were reluctant to receive health checks. CONCLUSIONS: Solutions to improved Aboriginal cancer outcomes include focusing on the primary care sector encouraging general practitioners to be proactive to suspicion of symptoms with appropriate investigations to facilitate earlier diagnosis and the need to improve Aboriginal health literacy regarding cancer. Access to health services remains a critical problem affecting timely diagnosis

Reducing barriers to consulting a General Practitioner in patients at increased risk of lung cancer: a qualitative evaluation of the CHEST Australia intervention

Background Lung cancer has one of the lowest survival outcomes of any cancer because over two-thirds of patients are diagnosed when curative treatment is no longer possible, partly due to later presentation with symptoms to a healthcare provider. Objective To explore the theoretical underpinning of the Scottish CHEST intervention in participants randomized to the intervention group within the CHEST Australia trial. Methods A purposive maximum variation sample of participants who received the intervention in the CHEST trial in Perth, Western Australia (N = 13) and Melbourne, Victoria, (N = 7) were interviewed. Patients were asked about their experience of the CHEST consultation, their recall of the main messages, their symptom appraisal and issues relating to help seeking when they develop symptoms. Thematic analysis was conducted to draw common themes between the participants. Results We identified themes consistent with the theoretical basis of the CHEST intervention. Barriers to consultation identified in the CHEST Australia trial participants were smoker stigmatization, guilt, fatalism and symptom normalization. We identified a general perceived mistrust of GPs based on previous negative experiences of visiting their GP in relation to their smoking. The intervention tackled barriers around lecturing and feelings of guilt and stigma related to smoking. We identified expected effects on salience and personal relevance of symptoms. Participants reported a clearer understanding of what to look out for and when to take action after the CHEST intervention. Conclusions These findings suggest that the CHEST Australia intervention is achieving the desired objectives at the qualitative level through the proposed theoretical mechanisms.This trial is funded by the National Health and Medical Research Council. (NHMRC grant ID 1064121)

Not just bricks and mortar: planning hospital cancer services for Aboriginal people

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>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.</p> <p>Findings</p> <p>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.</p> <p>Conclusions</p> <p>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.</p

Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods/Design</p> <p>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.</p> <p>Discussion and conclusion</p> <p>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.</p

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: A comprehensive review

Background: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. Objectives: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples’ preferences, needs, opportunities and barriers to palliative care. Methods: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly’s hierarchy of evidence-for-practice in qualitative research. Results: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples’ experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. Conclusions: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas