“Below Their Notice”: Exploring Women's Subjective Experiences of Cancer System Exclusion

Abstract

Background. The experiences that marginalized breast cancer populations have in common are rarely considered. Methods. The authors look across 3 qualitative studies to explore the experiences of older, lower-income, and Aboriginal women diagnosed with cancer and treated by the cancer care system in Ontario, Canada. Results. The research examines critical moments in participants' narratives that parallel one another and are categorized within 2 themes: Not Getting Cancer Care and Not Getting Supportive Care. Conclusions. Although exploratory, the findings merit attention both for what they tell us about women's experiences, and because they suggest disparities in access to treatment and psychosocial support.

ACKNOWLEDGEMENTS

The authors thank the community advisory members and the women who participated in the three studies (together known as the Intersecting Vulnerabilities research program). The Intersecting Vulnerabilities research program was funded by the Canadian Institutes of Health Research. The home of the Intersecting Vulnerabilities research program was the Ontario Breast Cancer Community Research Initiative (OBC CRI). The Ontario Breast Cancer Community Research Initiative was a partnership of Sunnybrook Health Sciences Centre, the Women's College Research Institute, and was funded by the Canadian Breast Cancer Foundation, Ontario Chapter. Projects undertaken by the OBCCRI, including those referred to in this article, are described in the book, Cancer on the Margins: Method and Meaning in Participatory Research, published by University of Toronto Press (2009).

Notes

^aHealth care for Aboriginal and Inuit people in Canada falls within the federal government jurisdiction, and is therefore funded through a channel separate from the provincially organized universal medicare system. However, in this paper, we concern ourselves with health services access at programmatic levels.

^bWith the recent (and controversial) exception of some new chemotherapeutic agents.

^cPlease note that saturation of the data (the point at which no new information about the data is forthcoming) is considered to be reached with a sample size of 12 [31].

^dWe did not address the ways in which individual women who took part a particular ‘arm’ of any one of the three studies shared social locations with women who participated in the other projects. For example, some Aboriginal participants were also older and/or were also living in lower-income circumstances. Instead we chose to foreground a particular aspect of their social location in any one study. Furthermore, we did not foreground all aspects of marginality in cancer care. For example, we did not foreground rurality though many Ontarians, including Aboriginal women, live in rural locations and experience difficulties accessing cancer care [32]. Native peoples must engage with a complex and fragmented health care delivery system which results in delays and omissions in case coordination, and inhibits access to screening, diagnosis, support, care and prescription drugs [32, 33]. As well, there is typically a shortage of medical personnel and health services in rural and remote communities and laboratories and screening programs are not often available in these areas [34, 35]. Although many communities report the presence of community health clinics, these centres may be operating under both geographical, fiscal and administrative constraints resulting in understaffing, lack of continuity of care and an unequal distribution of, and access to, quality health services generally, and cancer care specifically [33].

^eIn this cross-analysis we were not focused on documenting the frequency of events. Instead we endeavoured to develop and highlight meanings, categories, and theoretical explanations [17, 18].

^f Names that appear next to quotes in this document are pseudonyms.

^gThe data must be interpreted with caution because of the small number of patients who reported out-of-pocket-expenses.

^hWhen we refer to patient-centred care ‘at its best,’ we intend to point to the distinctions between a genuinely patient-centred approaches and the rhetoric of patient-centredeness - which has resulted in fewer and less diversified services under the guise of self-direction and self-determination [36].