“I can’t do this, it’s too much”: Building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers.
Treloar C, Gray R, Brener L, Jackson C, Saunders V, Johnson P, Harris M, Butow P, Newman C (2013)
This research explores how socially included (or excluded) Aboriginal people feel within the NSW health care system. Social inclusion refers to a person’s experience and perception of how societies and institutions (such as hospitals) value, respect and include them as part of the community. Research suggests that if individuals or communities are prevented from participating fully in the economic, social, and political life of the society in which they live this may impact on their health outcomes.
Why is this research important?
Cancer is the second most common cause of death for Aboriginal people, with Aboriginal people 60% more likely to die from their cancer than non-Aboriginal people. Despite this difference there has been little previous research into Aboriginal people’s experience of cancer. This research provides an important insight into how socially included Aboriginal people feel within the health system and how this may impact on their cancer experiences. Identifying the social and economic barriers that Aboriginal people might experience in their cancer journeys is a first step to understanding how to reduce the gap in cancer outcomes between Aboriginal and non-Aboriginal people in NSW.
How was this research done?
This research formed the qualitative arm of the Aboriginal Patterns of Cancer Care Project (APOCC) and was conducted by a team of Aboriginal and non-Aboriginal researchers with expertise in qualitative health research. Qualitative research gathers in depth information which provides an understanding of human behavior and investigates the ‘why’ and ‘how’ of decision making.
For this research Aboriginal interviewers invited participants to talk at length about their understanding and thoughts about cancer, as well as their personal and/or professional experiences of cancer. Interviews were conducted with 22 Aboriginal people who had experienced cancer, 18 carers of Aboriginal people (14 identified as Aboriginal) and 16 health care workers (8 identified as Aboriginal) with a range of professional roles in cancer care and Aboriginal health. The interviews were conducted through visits to a number of Aboriginal Medical Services, Hospital Oncology (cancer) and Palliative (end of life) services across NSW.
To ensure that appropriate cultural protocols were followed a senior Aboriginal member was employed to act as cultural advisor and mentor to the research team.
What were the results?
Results revealed that many Aboriginal people experience social exclusion when navigating through the health care system. The main barriers to building social inclusion were identified as social and economic disadvantage, fear and mistrust of the health care system and a general lack of knowledge and understanding of cancer and its treatment.
Lack of socio-economic security
This paper found that Aboriginal people were more likely to forgo cancer treatment if they had to leave their family or Country to receive treatment, or if they or their families had to incur travel and treatment costs. Family, community and cultural obligations were often prioritized over their own needs. If the survival outcomes of Aboriginal cancer patients are to be improved, the focus of cancer care for Aboriginal people needs to be broadened beyond medical care, so that the psychological, financial, social and practical needs of Aboriginal patients are also met.
Fear and mistrust of the health care system
Aboriginal people interviewed for this paper often referred to feeling unsafe, fearful and unsupported within the complex health care system. Furthermore, many were found to have only ever engaged with Aboriginal community-controlled health services prior to their experience of cancer, so had little knowledge or understanding of the mainstream health care system. It seems that Aboriginal people often did not know what to expect when they were diagnosed with cancer, and were unsure about their treatment pathway, the different stages of the cancer journey and the ways that they could be supported at each stage.
Limited Aboriginal health workforce
This research also found that there are few Aboriginal Health Workers in both primary community and mainstream health care settings. This shortage of culturally appropriate health workers, combined with the limited knowledge of cancer and cancer care pathways were also seen as significant barriers to appropriate cancer care for Aboriginal people in NSW.
- Building socio-economic security could be assisted by providing immediate practical and financial assistance to Aboriginal people with a cancer diagnosis.
- Increasing financial assistance for all treatment, medication and travel costs could potentially see more Aboriginal people accessing the full range of treatment options available.
- Addressing issues of fear and mistrust may be possible through the development of more culturally appropriate models of care. Programs and Aboriginal staff are needed to help Aboriginal people navigate cancer care, linked with local Aboriginal Community-Controlled Health Services.
- The present mainly non-Aboriginal cancer care workforce will require greater support in increasing their cultural awareness and confidence in ‘ways of speaking’ about cultural difference if the growing numbers of Aboriginal people affected by cancer are to be effectively engaged in care and treatment into the future.
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This work was produced by the Centre for Social Research in Health, University of New South Wales (UNSW) as part of the Aboriginal Patterns of Cancer Care Project (APOCC) which was funded by a National Health and Medical Research Council Health Services grant.