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

Situating network infrastructure with people, practices, and beyond: A community building workshop

Our world is now connected and even entangled in unprecedented ways through networked technologies. Yet pockets of unequal connectivity persist, and technical infrastructures for connectivity remain difficult to design and build even for experts. In this workshop we aim to bring together a global community of multi- and inter-disciplinary researchers and implementers working on infrastructure development and connectivity to explore the existing design challenges and opportunities for bringing technical dimensions of networked infrastructures in conversation with human-computer interaction (HCI) and the social science of infrastructure. We will share, assess and define research problems and resources for rethinking networked infrastructures from human-, community-, and society-centered perspectives, understanding them to be embedded with human values and biases. We particularly intend our collaborative work to support real-world connectivity initiatives, which have grown in critical importance over the pandemic years—especially projects in support of Global South communities. Concrete deliverables from the workshop will include: (1) an initial shared bibliography to help formalize the state of knowledge in our area, (2) an agenda of shared goals, challenges, and intentions in our field, (3) a compilation of resources to support future work, and (4) social and organizing infrastructures for continued communication and academic collaboration

Comparative assessment of effectiveness of Bus Rapid Transit (BRT) systems of Johannesburg and Tshwane

Abstract: Transport remains connected to our indigenous habitat, wellbeing and monetary thriving which rely upon good transport frameworks that provides effectiveness, comfort, fairness as well as affordability. Public transport is often framed as key component of building sustainable cities. Nonetheless, present estimations recommend that transport development is unjustifiable. Transport intimidates the social, economic, and our environmental future. Modifying as well as overseeing patterns of transport shows a critical issue which necessitates collaboration from participants at all governmental spheres. The study presents the critical review of literature of the relationship between public transport and sustainability with the purpose to comparatively assess the effectiveness of BRT systems of Johannesburg and Tshwane metropolitan cities. The study identifies the impacts, status quo, and benefits of this bus system, as well as its integration to other modes of transport. The study contributes to transport domain by identifying the key problems associated with sustainability of transport based on the perceptions and discussions of significant literature on transport. The attention is on connection amongst sustainable transport division and the sustainable development within South African setting...M.Ing. (Sustainable Urban Planning and Development

The Utility of Mobile Phones for Health Among Women Living with HIV in Urban Malawi

The use of mobile phones are becoming ubiquitous with growing interest by healthcare providers to utilize mobile phone technology for various health-related applications, called mHealth. This is especially true in low-income countries such as those in sub-Saharan Africa. When implementing mHealth applications, it is important to understand the dynamic social, cultural and environmental factors where mHealth will be implemented to ensure that interventions developed are effective. A qualitative study to explore the sociotechnical factors experienced by women participating in an HIV support group in urban Malawi was conducted to enhance our understanding of women’s experience with mobile phone use and its implications on their health. Ten individual interviews and one focus group interview were completed with women, using narrative methods and a sociotechnical view to inform data analysis. Narrative structural and thematic analysis were used to analyze the individual interview data, and thematic analysis was used to analyze the focus group interview data. This study offers valuable insights into the sociotechnical factors impacting mobile phone use and its implications on health within this urban context. Findings are discussed under four main areas: 1. Health-related activities and tasks; 2. Social related activities and tasks; 3. Income generation activities and tasks; and 4. Technical challenges. Implications for policy discussed include the scaling up of programs incorporating mobile phones in sub-Saharan Africa as part of the HIV prevention and treatment plan and partnering with NGO’s and churches to leverage funding and existing community based resources. Implications for future research include an opportunity for further theory development around community health frameworks that are sensitive to the African world view of person and community in addition to further exploring the utility of mobile phone technology in enhancing health outcomes for people living with HIV