Health literacy and the experience of Aboriginal people with cancer: results of a qualitative research project in NSW*

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health literacy carla treloar_oncology news australia_800x500By Carla Treloar, Professor and Deputy Director of the Centre for Social Research in Health, UNSW, and L. Clair Jackson, Centre for Social Research in Health, UNSW.

Awareness is growing of the impact of cancer among Aboriginal Australians. Cancer is now the second most common cause of mortality among Aboriginal Australians.

Aboriginal Australians with cancer report  poorer outcomes than non-Aboriginal Australians despite overall increases in cancer outcomes. Although there is a varying pattern of data quality, it is evident that there are improvements to be made in all areas of cancer care. The engagement in cancer care for Aboriginal Australians is lower at all stages including screening, stage of cancer at treatment, continuity of care, compliance with treatment and five-year survival rates.

This was the starting point for a NHMRC-funded project led by the Cancer Council of NSW: the Aboriginal Patterns of Cancer Care (APOCC) study. The Centre for Social Research in Health was a key partner in this project and undertook a qualitative study to explore a range of questions including: how do Aboriginal Australians understand cancer and engage with care; and how can health services do better in engaging with Aboriginal Australians and meeting their needs?

Between 2008 and 2011, our team undertook interviews with 22 Aboriginal people living with cancer, 18 people who identified as carers of Aboriginal people with cancer (of whom 14 identified as Aboriginal Australian) and 16 health workers (of whom eight identified as Aboriginal Australian).  Our research team included Aboriginal and non-Aboriginal staff. Our work was guided by an Australian cultural mentor (CJ) who supported all staff to deepen our understandings of Aboriginal life and to ensure that our research was in accordance with expected community protocols.

A concept that has been used to explore and understand differences between health outcomes between groups is health literacy. Groups that have lower health literacy have also reported higher health care costs, higher rates of hospitalisation, more tertiary health care and less primary (preventive) health care.  Although there are multiple definitions of health literacy, the one used in this study focussed on the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.

The interviews explored many aspects of life both about cancer specifically and about health and well-bring more generally. An issue which struck the non-Aboriginal researchers was the extent to which Aboriginal participants indicated that they did not expect cancer to touch their lives, or indeed, the very low awareness of cancer revealed in interviews.  Nigella was living with cancer and had previously worked as a health worker. Her quote is illustrative of a number of participants, that cancer was not something she expected in her life:

Cancer has never sort of crossed my life till now … I used to be a health worker, an educator, but cancer was never part of my life, I never knew anyone with cancer, I never seen anyone with cancer, maybe on TV but not in the here and now, cos I was always busy with Aboriginal health and teaching Aboriginal health, but cancer was never part of our programme, which was a shame. (Nigella**, patient)

This finding, that cancer was not an expectation in the lives of Aboriginal participants, was remarkable for the non-Aboriginal researchers, all of whom anticipated (or had already experienced) cancer to touch everyone’s lives, including their own. The team continued to examine the data to explore what were the factors supporting this expectation of cancer.

Participants revealed that what they saw in the mainstream media did not include Aboriginal people and hence, these messages were seen as less relevant for Aboriginal communities.  Also, although participants had little experience of cancer being present in other parts of life. This absence was in comparison to other health issues which were discussed and present in participants’ lives.

There’s no information session at the ground roots, on the reserves and that to speak to people … I belong to the Aboriginal Women’s [group]… we had all these information sessions, but I don’t think we had one on cancer. We done a lot of women’s problems, but we didn’t touch on cancer and I guess it didn’t even come to mind anyway, what I can remember we didn’t, you know, it wasn’t talked about (Nola, carer)

The findings from this study reflected what has been found previously regarding a particular aspect of cancer understandings. When cancer was acknowledged in the communities, the misinformed perception was held that cancer automatically led to death. This could lead to people avoiding screening and treatment for cancer (for fear of hastening illness) as well as possibly creating barriers to support of people diagnosed with cancer.

….there’s also some degree of lack of education among our people so…. you have some families who might abandon the person who has cancer because they are too frightened by it and they think that cancer is a death sentence, so as soon as the diagnosis comes, they shut down with fear. (Evelyn, Aboriginal health worker)

Together, these factors resulted in a silence and absence of cancer which provided opportunities for misinformation and fear about cancer to act as barriers to engagement in cancer screening and care. Our results suggest that there are a number of strategies to address these misunderstandings and promote health literacy in relation to cancer. These strategies include grass-roots education campaigns within community settings, upskilling of workers involved with Aboriginal communities and for specialty cancer services to make efforts to better engage with Aboriginal communities.

Aboriginal communities have a proud history of community-controlled health care. However, these services rarely provide cancer care which is typically provided in the tertiary care sector. Providing support to Aboriginal health services and to health workers in those services will also be required to affect the health literacy of the community and health workers.

In this paper we have used the concept of health literacy to explore Aboriginal Australian experiences of cancer. We deliberately chose this concept as a means to engage with this important question while avoiding using frameworks that assume deficiency of Aboriginal people, communities and health services. Health literacy is useful as we could all have improved understanding and skills in some areas of health and it also allows us to consider the range of people, services and organisations that could facilitate increasing health literacy. While health literacy is important in these ways, any efforts to affect the health of Aboriginal people should be aware and take account of the histories of Aboriginal people and the fear, mistrust and perception of institutionalised racism that may have been generated in relation to mainstream health care.

*the term Aboriginal Australians is respectfully used to refer to Aboriginal and Torres Strait Islander people

**pseudonyms are used throughout

 

This report is based on the paper:

Treloar C, Gray R, Brener L, Jackson C, Saunders V, Johnson P, Harris M, Butow P, Newman C.  Health literacy in relation to cancer: Addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services. Health and Social Care in the Community. 2013 21(6), 655–664.

Carla Treloar is Professor and Deputy Director of the Centre for Social Research in Health, UNSW, Australia and was team leader on the qualitative component of the APOCC Project.

L. Clair Jackson is Ugarapul/Githabal (Jagara Nation, SE Qld) woman. She has lived mostly in Sydney, working in education, research and the arts and is now consulting as the Aboriginal Cultural Mentor/Advisor to the Centre for Social Research in Health, UNSW Australia.

For more information see: https://csrh.arts.unsw.edu.au/research/populations/indigenous-australians/

For more information about the APOCC study click here.

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