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Table 5 THEME 2 - Barriers and unmet needs

From: Australian integrative oncology services: a mixed-method study exploring the views of cancer survivors

Lack of availability of IO services
 • “It’s not fair to come here only once a fortnight or once in 20 days because you don’t get the benefit [of acupuncture] … The massage therapist, half an hour is not enough. You have people with limited mobility and the time that is taking to get into the room, to get undressed, you’ve got a questionnaire to fill out before the treatment and then after the treatment … there is a limit on the number of times I can access oncology massage following my cancer treatment.” (Anglo-European FG)  • “I think it should be better for each hospital have one [T&CM] department. You know why? Some time we went to the [hospital] – they got more Chinese patients. They know more knowledge about the Chinese medicine. Even we went to the [hospital] – they don’t know anything. They only have Western people.” (Chinese FG)
Difficulties with referral pathways and information
 • “We don’t know anything about it. Nobody tell us – no information about that and how. There’s a lack of information.” (Arabic FG)  • “We need to know what the herbs [are that can] help us – what sort of herbs – millions of herbs. What sort of herbs, what sorts of food is good?” (Arabic FG)  • “I’ve been through this journey for a long time and I’m still suffering, but when I go to the doctor, the doctor just tell me to take this tablet before food, this tablet after food, and this. He never mentioned any other support or any other alternative that we can do”. (Arabic FG)  • “But only a couple of months ago, [the doctor] goes … “Why don’t you try acupuncture?” And I thought, “Oh, great. Okay, something new.” But why wasn’t it mentioned one and a half years ago? … why did I have to get to breaking point to be told – look, what’s available?” (Anglo-European FG)  • “Doctors should be encouraged to use [T&CM] therapies for their patients in conjunction with their treatment not instead of, or as an after-thought.” (Survey)  • “The best [source for information and referrals] is GP, because you always go to your GP, and he has to know. He has to have the education to know all that, to tell us what to do, and if you go to the hospital, you have a long waiting time… [yet] the GP doesn’t have enough information. The GP said, “Just do whatever they [the oncologist] tell you…” but the oncology told us about the treatment, that’s it! Maybe you can know the information from the nurse or from social worker?” (Arabic FG)  • Interpreter: “There’s many channels that you can have access to information related to complementary medicine for cancer patients. We can hear about from your family members, from community, from GPs... [the problem is that] we receive very conflicting information and it’s not well-organised.” (Chinese FG)  • “The where is not as important as knowing what is available - being informed - preferably by not relying on one source to provide information.” (Survey)
Absence of medical practitioner support
 • “My oncology doctor tell me, “I don’t want to know”.” (Chinese FG)  • “Maybe we’re just waiting for chemo or anything, but actually in the meantime, we’re taking other supplements, this sort of thing.” (Chinese FG)  • “They should be told because they need to know if it interferes with treatment.” (Survey)  • “It shouldn’t be the secret that it often seems. Treatment should be a team approach including support and acceptance”. (Survey)  • “If my oncology team aware of my complementary therapies and they have given good results, it could help others.” (Survey)  • “My team know I do complementary therapies but we do not discuss this as they are not open to it. I have no issues with them knowing as I am proud that I am being active in seeking self-help.” (Survey)  • “Unfortunately, I was advised that many oncologist frown on these therapies. Personally, I was lucky enough to not come across this attitude but was simply told while the benefits of such therapies hadn’t been proved they hadn’t been disproved either.” (Survey)  • “[Doctors] will not recommend anything [that] is not proved. And it is their duty and they’re professional”. (Chinese FG)  • “I think traditionally, there’s always been this thing between doctors and alternative therapy practitioners.” (Anglo-European FG)  • “Those who do receive education here in the Western world, they don’t have any faith in traditional Chinese medicine.” (Chinese FG)  • “It shouldn’t be looked at as an ‘us and them’ thing, the patient needs to get well asap and different remedies, just as different chemos, work on different patients.” (Survey)  • “I would prefer these complementary things to become more mainstream, and to not have to justify them as if I am some kind of gullible idiot.” (Survey)
Difficulties with access
 • “Lack of energy is a big factor, making more appointments when you already have a lot of appointments puts me off. Having a massage therapist come to the house would be great!” (Survey)  • “There was an extended period of time when I was certainly too ill to access anything that was not absolutely necessary.” (Survey)  • “I would like to see a natural therapist, but as it is in another suburb, I haven’t had the energy and keep putting it off. I may do it soon.” (Survey)  • “I just don’t have the time at the moment, as I am in the middle of daily radiation and it takes me 1 1/2 h to the cancer centre and 1 1/2 h back. It’s the travelling that wears me out, not the treatment.” (Survey)  • “Transport is a problem for me to try to get to her private practice. I can’t do that. So, she’s got to go without”. (Arabic FG, caregiver)  • Interpreter: “He said if it can be near the station. I think a lot of transport, I think, is an issue, isn’t it?” (Arabic FG)  • “I’m picked up at 6:30 in the morning. My appointment might not be till 10:00 because their drop off there is 8:00 … their last pick up is at a certain time … And you’re exhausted at the end of the day.” (Anglo-European FG)  • “I would have used more yoga but it wasn’t available at a time that suited and local classes were too intense. I also couldn’t find a suitable meditation class so only managed to do this on a breast cancer retreat and then privately.” (Anglo-European FG)
Cost of care
 • Interpreter: “So now it’s common understanding amongst the cancer patients that with complementary treatment that the cost associated with it is really a huge burden on us besides the disease, it’s not affordable – financial pressure. This is one of the barriers.” (Chinese FG)  • “All of us, we are a pensioner... We couldn’t pay [for T&CM]”. (Arabic FG)  • “They are very expensive as an ongoing treatment given all the out of pocket expenses associated with cancer surgery.” (Survey)  • “Complementary therapies are seen as a luxury and often expensive especially when income capacity is reduced due to illness.” (Survey)  • Interpreter: “Yeah. So, same thing, because cancer is a chronic disease, it takes a long time for you to recover, not only for – mentally and physically. So, they really need the financial support from the government.” (Chinese FG)  • “I reckon the government should pay for it. Why shouldn’t they? I mean the rich get richer, the poor get poorer. I mean it’s lucky for some people who’ve got – like me, I’ve got my life and personal accident insurance, but who else would have that?” (Anglo-English FG)  • “We pay $4000 for the health fund – we only get such items – only $200 [in total rebates for T&CM services]. How can we afford it?” (Chinese FG)  • Interpreter: “Funded by the government, that will be good, but then if not, then of course, it’s the children that help out parents. So if the children don’t give, then I just have to live with that.” (Vietnamese FG)  • “I went back to China to bring capsules here ... it’s much cheaper there.” (Chinese FG)  • “I’m just conscious of people thinking when you go for the massage that it’s just about spoiling yourself. It’s like going to the day spa. It’s not day spa type massage. It’s therapeutic remedial massage.” (Anglo-English FG)  • “So, that might be reason why there’s difficulty perhaps in getting continued funding and so on because it’s easy for people to think it’s just a – this is just a feel-good stuff. It’s not. And the same with the acupuncture, it’s not just feel-good stuff and I can’t emphasise that enough. It’s much, much more.” (Anglo-English FG)  • “I myself struggle to pay for themand they aren’t a luxury item they are a necessity to minimize damage and should be part of the Medicare rebate.” (Survey)