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Table 2 Themes and priorities raised by cancer-affected participants and health professionals, with illustrative quotes

From: Understanding Indigenous Australians’ experiences of cancer care: stakeholders’ views on what to measure and how to measure it

Theme Common priorities amongst participant groups Participant quotes
Feeling safe in the system Compromised trust in the system and individual staff; impact of colonisation and institutional racism; hospital surroundings in the context of cultural safety; positive impact of a trusting relationship with staff. • ''We had a connection because I built up a relationship with her that I could actually talk to her openly and honestly about.’ (302 CaAff).
•‘The issue of decision-making is one where everyone says it’s your own decision but the reality is that it’s not actually. Because of your economic situation, your cultural timidity or you’re culturally intimidated by this dominant white medical culture.’ (511 CaAff).
Importance of Indigenous care providers Access to an ALO/AHW important for whole pathway, particularly if patient away from home or lacking family support; lack of Indigenous health staff, which can positively influence a patient to stay in treatment; Support for Aboriginal Community Controlled Health Organisations (ACCHOs). • ‘this big health service was here. But where was my people?’ (305 CaAff).
• ‘part of you’; ‘more approachable in the community’ (511 CaAff, referring to ACCHOs).
Barriers to care Logistical barriers such as finance, accommodation and transport, more acute for those people receiving treatment away from home; acknowledgment that programs exist to address shortfalls, but they are not applied comprehensively. • ''So if a patient needs six weeks of daily chemo and needs to stay there, that’s a big financial burden, especially if they’ve living in the regions and they need to come into the city for appointments, petrol money – you know, that was a big issue too'. (504 Both).
'Lot of Aboriginal people won’t go because they’ve got no money for travel; they’ve got no money for food'. (503 CaAff).
The role of family and friends Inclusion of family and friends was seen as crucial by all participant groups and contributed to relieving fear and anxiety; accommodating family (both literally and figuratively) in the hospital setting. • ‘You know they may be the decision-maker in the family and things like that. So while they’re away having their treatment, the family…breaks down…And then they’re coming in, …to the patient and they’re bringing those worries from home in with them...’ (504 Both).
Effective communication and education Reduced ability to absorb information following a cancer diagnosis; appropriate language; relationship building; listening to patients; determining who to communicate with in family; unconscious bias; need to feel safe to ask questions. • ‘repeating that information’s important because all the information–like you only really get 10 % of it – you’re just shocked and end of the world and stressed’ (507 CaAff).
Coordination of care/navigation of the system and transition between services Coordination of care was commonly reported as lacking and being of crucial importance. The need for assistance to navigate through complex treatment regimens and systems, was commonly (though not exclusively) reported in relation to the transition into primary health care following treatment. • ‘I found that I was let down with one of the main services that I really…depended on…(after) being discharged from hospital. I had a bad experience. I was left to fend for myself. I had to maintain my house ….which resulted (in) me getting infected and.. a lot of follow-up with doctors and medication, which could have been avoided..’ (305 CaAff).
  1. Legend: CaAff Indigenous person, cancer affected; HP Health professionals; Both Indigenous person, cancer affected and a health professional