How can breast cancer policy and practice better meet the needs of Aboriginal and Torres Strait Islander women in Australia?

<p dir="ltr">Background:</p><p dir="ltr">While the incidence of breast cancer is lower in Aboriginal and Torres Strait Islander women than non-Indigenous women, the mortality rate is higher, with Indigenous women 1.2 times more likely to die from the disease. There is a number of documented contributory factors, but the knowledge has not yet been incorporated into policy or practice in Australia.</p><p dir="ltr">Aim:</p><p dir="ltr">The aim of this thesis is to understand the ways in which breast cancer early detection and care could better meet the needs of Indigenous women and to develop some recommendations for breast cancer research, practice and policy change.</p><p dir="ltr">Methods:</p><p dir="ltr">The research includes: a systematic review, a methodological analysis, a co-designed protocol, a qualitative data analysis, and a policy review.</p><p dir="ltr">Study 1, a systematic review registered with PROSPERO and guided by the PRISMA statement that utilised a modified Community Engagement Tool (CET) to evaluate the literature through a cultural lens.</p><p dir="ltr">Study 2, a further analysis of the papers included in the systematic review, evaluated using typical research tools (EPHPP and CASP) and compared with the CET to determine effective ways to evaluate literature relevant to Indigenous health.</p><p dir="ltr">Study 3, a co-designed protocol for a mixed methods study with five communities in regional and rural NSW, focused on improving breast cancer outcomes for Indigenous women.</p><p dir="ltr">Study 4, a qualitative data analysis via focus groups and semi-structured interviews with Indigenous women and service providers to better understand the perspectives of those affected by health policy and those delivering health services.</p><p dir="ltr">Study 5, a review utilising the Delphi method to examine breast cancer policy in Australia and explore how it might be further developed and improved to better meet the needs of Indigenous women.</p><p dir="ltr">Results:</p><p dir="ltr">Study 1 found that the more culturally safe the service, the better the breast cancer outcomes for Indigenous women in high income counties.</p><p dir="ltr">Study 2 found that both typical tools and those developed specifically for Indigenous peoples, are necessary if we want to comprehensively evaluate programs or services intended for Indigenous people.</p><p dir="ltr">Study 3 developed a protocol for improving breast cancer care services for Indigenous women in regional and rural NSW.</p><p dir="ltr">Study 4 found that cultural safety, presence of Indigenous staff and support, and the inclusion of family and community in the breast cancer journey are imperative outcomes are to be improved.</p><p dir="ltr">Study 5 found that breast cancer policy in Australia needs to be modified to address the needs of Indigenous women.</p><p dir="ltr">Discussion:</p><p dir="ltr">This thesis demonstrates that while the poorer outcomes experienced by Indigenous women with breast cancer have been described, not enough of the evidence has enabled constructive change. Looking at the evidence globally and locally, there are clear directions to improve outcomes and this research found that change must start with, 1) simple practice changes, followed by 2) inclusive, culturally safe breast cancer policy.</p><p dir="ltr">Conclusions:</p><p dir="ltr">To achieve parity in breast cancer outcomes, change is required in policy and practice. Indigenous women are saying loudly and clearly what they need and we must listen and act.</p>