A total of 75 Indigenous patients (45 female and 30 male) were interviewed. The majority of Indigenous patients were diagnosed with cancer within six months prior to the interview date (60%), were not in paid employment (79%), and had at least one comorbid disease (72%). Slightly more patients were older than 50 years (56%) and reported not having a spouse (52%).
A total of 29 care providers (21 female and 8 male) were interviewed. Care providers held diverse roles, including Radiation/Medical Oncology Consultants (n = 5); Oncology Nursing Staff (n = 5); Radiation Therapists (n = 8); Indigenous Liaison Officer (n = 1); Cancer Care Coordinator (n = 2); other Allied Health professional (n = 3); managerial, administrative and support staff (n = 4); and a medical student (n = 1).
Qualitative analysis of the patient and care provider interviews revealed several key factors impacting Indigenous cancer patients’ access to CTS-NT across the five service-level dimensions and the corresponding patient-level abilities of the Levesque conceptual framework of access to health care. These barriers are described in detail here and are summarised in Table 1.
Table 1
Barriers facing Indigenous patients accessing CTS-NT across the five dimensions of accessibility
DIMENSION
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BARRIERS FACING INDIGENOUS PATIENTS ACCESSING CTS-NT
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Approachability
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• Patients being ill-prepared and poorly-informed about their cancer
• Patients being poorly-informed about the nature and justification for the treatment
• Mistrust of mainstream health services
• Delayed and complicated commencement of cancer treatment
• Dislocation from home while accessing treatment
• Juggling priorities at home with the demands of cancer treatment
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Acceptability
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• Scarcity of Indigenous care providers and staff at CTS-NT
• Incongruity of values between Indigenous patients and the CTS-NT
• Insufficiency of culturally-sensitive care
• Challenges associated with language, translation, and communication
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Availability and accommodation
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• Difficulties accessing transport
• Inappropriate and/or unacceptable accommodation and food
• Dislocation from social support
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Affordability
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• ‘Hidden costs’ associated with travel, accommodation and food
• Loss of income occasioned financial hardship
• Challenges supporting family
• Uncertainty around financial supports available to patients
• Lack of knowledge on where access information about financial support
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Appropriateness
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• Disjointed and fraught relationships with care providers
• High staff turnover rates hindering culturally-sensitive care
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Approachability
The approachability dimension of access refers to the degree to which people with a health need can identify that a suitable service exists, can be reached, and will benefit them.13 While our analysis focuses on people who have some level of engagement with CTS-NT, the participant views reveal considerable approachability-related barriers to Indigenous people initiating and maintaining this engagement – particularly for those living outside of CTS-NT’s regional location. These barriers served to delay, discourage and challenge Indigenous people from engaging with their cancer care. Several patients expressed confusion and uncertainty about what the treatment process involved, and some patients expressed feeling inadequately informed about their health condition.
Care providers also spoke about Indigenous patients commonly arriving at CTS-NT unaware that they had been diagnosed with cancer. It was suggested that staff in community health settings were reluctant to explicitly inform Indigenous patients of their cancer diagnosis, instead using nebulous terms like ‘biopsy’, ‘test’ and ‘treatment’ to explain the patient’s need to go to Darwin for medical treatment. Care providers regarded this unpreparedness as occasioning shock and mistrust for many Indigenous patients, which undermined patients’ confidence in the arduous and lengthy treatment regimen, which already involved enormous upheaval and strain for patients.
‘Because when [patients] come here, obviously you have patients that are not well prepared and uninformed, some of them don’t even know they have got cancer, so, it is the early part of the journey that is the issue in the Northern Territory in the sense that, you know, patients get told, “you need to do this test, you need to do this biopsy,” and then sometimes the information about informing the patient that they got cancer is missed.’ [Care provider, CP003a]
One patient suggested that the Traditional Healer from their community should be invited to the CTS-NT to undertake a cancer education training program so that he could better explain to community members who are diagnosed with cancer about the nature of their condition and treatment and the benefits of maintaining their treatment regimens.
Care providers also described that timely diagnosis and commencement of treatment was a key challenge, as many Indigenous patients present for treatment in advanced stages of cancer. This was attributed by care providers to multiple causes, including: limited outreach services; variable quality of communication with community health services; limited access to prevention and screening programs; the lack of identification of symptoms in early cancer stages; a reluctance to seek treatment due to an association between cancer treatment and death; and an historically-based mistrust of Western medical services. Care providers identified these issues as barriers to Indigenous patients seeking medical help, commencing cancer treatment and maintaining their cancer treatment once they had started.
“[A patient] might be “lost to follow up” or “lost” because they have gone off the radar or gone out bush, and then that has delayed their treatment time and then that has obviously played a big impact on their outcome, and then there is other times where they won’t realise the severity of their diagnoses.”[Care provider, CP002]
The delayed and complicated start of cancer treatment for many Indigenous patients was often associated with ongoing challenges in maintaining treatment regimens. Approximately one quarter of patients reported missing appointments since their treatment commenced. Patients explained their reasons for missing appointments, included: needing to return home for Sorry Business, worrying about situations in their home community, transport problems, issues with communication from CTS-NT staff, hostel staff and transport providers, and pressure from patients’ escorts or carers wanting to return home. One patient described having ‘problems when the escort wants to go home. Not everyone can stay for the duration of treatment.’ [Patient interview]
Care providers also spoke about Indigenous patients disengaging with treatment and missing appointments, which was attributed to transport difficulties, miscommunication between care providers and patients, patients returning to Community for Sorry Business and having a different conception and/or priority of time to the service providers.
‘Appointment schedules confusing. Process confusing. Just a sheet of times and dates. Need to sit down with nurse or [Indigenous Liaison Officer] and explain.’ [Patient interview]
Several care providers described how the CTS-NT had modified their service to offer greater flexibility, particularly around appointments, and individualised cancer care in order to minimise the access barriers for patients.
“I think [Indigenous patients] don’t have a time awareness so they don’t come on time. So, it’s a bit challenging to the health system because we are booked back to back and they don’t come on time, but they don’t know time, so it’s not their fault.” [Care provider, CP010]
“We’ve just become accustomed to…we have transport issues, so the patients might come on buses that may not always run to schedule. We’ve just learnt to be flexible.” [Care provider, CP004]
Acceptability
The acceptability dimension relates to cultural and social acceptability of the service to those seeking care, including the ethnicity, sex or social group of care providers and the health belief systems underpinning the service.13 The patients and care providers highlighted critical barriers in this area which centred around the scarcity of Indigenous staff working at the CTS-NT and the incongruity between the values underpinning the CTS-NT service and those held by Indigenous people.
The need to increase the number of Indigenous staff members, particularly those in clinical roles, was flagged by several care providers. It was also suggested that the CTS-NT would benefit from engaging an Indigenous spiritual healer to provide traditional medicine options to their patients.
The Indigenous Liaison officer (ILO) was described by many care providers as the main means of identifying the language and cultural requirements of Indigenous patients. The ILO was the link between the doctors and the patients to enable individualised, patient-centred care for this patient group. All care providers stressed the invaluable role of the ILO in bridging the, often vast, gap between medical services and Indigenous patients. Several respondents suggested the need for more than one ILO at the CTS-NT.
Patients also alluded to the importance of the ILO’s role, particularly in supporting communication and cultural mediation between patients and care providers.
‘[The ILO] helps me to understand what the doctors are telling me. I need her to help because I don't have escort with me.’ [Patient interview]
Despite the clear value of the ILO, there was only one ILO employed at the CTS-NT, and their position was not filled when they were absent on leave or working elsewhere. This situation was described by the ILO as leaving the Indigenous patients at a significant disadvantage and them feeling a sense of guilt for going on leave.
Care providers identified a mismatch between the mainstream biomedical paradigm of CTS-NT’s services and the holistic views of health they ascribed to Indigenous patients.
“The key thing about Indigenous patients in the pathways is their priorities are not the same as non- Indigenous patients, obviously. They have got family commitments and so forth, and all the other communities. So, in the model of care that we expect non-Indigenous patients – where they drop everything, and cancer becomes the prime focus – it may not be the same for Indigenous people. So, we have to, in a way respect that and get them to participate. We may not be sure that they are well-informed to all the seriousness of their cancers, because their concept of life and living and so on, it is a little bit different.” [Care provider, CP003a]
The diversity of Indigenous people’s culture and language across the Northern Territory was put forward by care providers as a challenge to integrate into the ‘one size fits all’ biomedically-based treatment setting. Care providers reported there were many Indigenous dialects in the Northern Territory, and the efficacy and availability of interpreter services was variably effective. This in turn put inappropriate pressure on the ILO to act as a translator on some occasions. English was often said to be the fifth or sixth language for many remote-living patients, which makes effective clinical communication more complicated. As there are no direct translations for most medical terms into Indigenous languages, care providers explained that they often use metaphors to convey their clinical message. Longer appointments are required for Indigenous patients to ensure they understood what was happening and being communicated.
“Because one bloke [a patient] said to me, he goes, “You have to understand, sister, I'm translating to four languages before I get back to you.” So, he found it difficult to go from English to his language, he had to go to another language, sort of, into another one, and then back to his and then go, okay, this is what it means, and then come back. So, a 15-minute consult took an hour and a half.” [Care provider, CP020]
Availability and accommodation
The availability and accommodation dimension refers to if the health service can be reached, physically and in a timely manner.13 All study participants reported that many Indigenous patients experience substantial access challenges associated with transport, accommodation, food and social support.
The patient reports revealed that 65 patients (87%) had to move away from home to receive cancer care. Those patients who had relocated from their home for treatment had been in Darwin for time periods ranging from 1 day to 6 months, with about half being away from home between one and four weeks. Of the 65 Indigenous patients who relocated to receive their cancer care, almost all (98%) had to do so due to the lack of treatment services closer to home.
All of the patients who relocated had heard of and used the Patient Assistant Travel Scheme (PATS) to subside the cost of their travel to seek treatment. Many patients reported difficulties in using this scheme, it was described as an inflexible system with a confusing booking system. Transportation was an issue as buses were often not on time, or they forgot to collect patients. Accommodation bookings were often hostel rooms that did not accommodate patients with wheelchairs or their escorts.
Patient has been living with son in Darwin for extended time due to treatment. Cannot get assistance to travel back to community. [Patient interview]
Many patients walked to the supermarket from their accommodation to buy groceries, while others reported using the bus, taxi, or getting a ride with family or friends. The taxi was often preferred; as one participant explained, this was due to the bus station being too far away and feeling unsafe walking at night. However, due to the cost, taking a taxi was not always viable.
The majority of patients who travelled away for their cancer care or treatment were supported with accommodation during this time, but over a third reported difficulties with accommodation. The difficulties around accommodation described by patients included: unsuitability of accommodation and food, and a lack of accommodation for family and/or escort. Most patients reported that they needed their escort at the accommodation. Some patients described transient living arrangements, moving between staying with relatives and long grassing. One such patient, who had missed multiple appointments, described the strain on her health she experienced during long grassing over the dry season. Another patient describes her experience of staying in a hostel as harrowing, with so many people coming and going.
‘You cannot get any rest there. It is frightening.’ [Patient interview]
Another female patient expressed a preference for living in the long grass. She explained that living in the hostel made her feel disconnected from her culture, friends and Country. She felt more supported in the long grass and can forget her worries when surrounded by familiar sounds, smells, friends and stories. Several patients explained that the hostel accommodation in Darwin is unsuitable for Indigenous people, especially those with family and escorts with young children. Moreover, hostel accommodation was said to be far from shops and to feel more like a prison than lodging.
Most people had someone go to their appointments with them (68%) and for the majority of these patients this role was fulfilled by the escort (86%). Partners (24%) and other family members (57%) commonly fulfilled the escort role for the patients. While escorts often came with patients from out of town, the reliability of escorts was reported by care providers to be varied. This meant that patients were said to be sometimes left unsupported. Care providers said that the ILO was constantly assessing and reassessing the needs of Indigenous patients in relation to their travel, accommodation, financial situation and the status of their escort or support person.
“In cancer, you have to accommodate and treat everything. The full spectrum, from psycho-social family issues. .. because they will impact on the cancer journey because the cancer journey is so vast and complex. .. without attending to any of those [additional issues], you know, you tend to have breakdown in compliance and so forth.” [Care provider, CP003a]
Other care providers also highlighted the view that Indigenous patients who relocate from remote communities to access treatment experience a range of stressors stemming from the move. Care providers felt that staying in Darwin was daunting and stressful for Indigenous patients, who often had little previous experience of a city. Navigating hostel accommodation, unfamiliar food and inflexible transport were all identified as issues reported to care providers by patients. Additionally, care providers reported that some Indigenous patients disengaged with treatment prematurely to return to their community due to the stress associated with being away from their own family and community responsibilities.
“I think separation from family is a big thing for [Indigenous patients] and accommodation, and again, it’s a major thing for them because although we are accommodating them, all our current accommodations are, the majority of them are air-conditioned accommodation and they serve Western food, they allow only one person to stay with the patient; they restrict visitors. That’s not how their social situation is, and they immediately feel claustrophobic and they feel isolated.” [Care provider, CP010]
Care providers described offering patients telehealth as a means to overcome these difficulties and reduce the time patients need to stay in town. Similarly, while patients are at CTS-NT, some care providers reported offering them opportunities to connect with community and family via video conference. This was described as important in facilitating community decision-making about the patient’s treatment, as well as reducing the patients’ isolation from family.
“Most of my first consults have 20 people in the consult. . .Before I start my first consult, I will see the referral, I will go and talk to my ILO and would say, okay, can you find out who will need to be in the consult … so she will go and find out all the names of the people who want to be in the consult. So, we dial up, we have tele link with the communities and we have extended family, 20, 30 people, it will take a lot of time but often I have left the patient with family at the end of the consult, to have a conversation amongst themselves and I come out from the room so that they are comfortable.“ [Care provider, CP010]
Affordability
The affordability dimension reflects people’s ability to spend the required money and time to use appropriate services. While many financial costs associated with accessing treatment were not bourn directly by patients, numerous ‘hidden’ costs were evident in the reports of patients and care providers that considerably impacted on treatment access.
Patients reported being poorly-informed around what financial supports they were entitled to, and how to find out about what was available to them. Many Indigenous patients had left jobs, family and financial responsibilities back in their home communities, and were having to find money for food and to pay additional expenses associated with life in town. Several patients expressed confusion about payments and reimbursements for travel, with some people being left significantly out of pocket due to miscommunication around receipts and processes.
‘PATS-not reimbursing in a timely manner. Still waiting on reimbursement for travel ... This is the worst thing. General living expenses are now very hard.’ [Patient interview]
The travel system is not fully explained. Patient was not advised that she could be reimbursed for taxi when bus schedule didn't meet her needs. She did not keep her receipts so couldn't claim fare back. [Patient interview]
Patients also reported difficulties in dealing with Centrelink (Australian Government payments and services) to access financial support due to loss of employment, illness and not being able to provide proof of their usual place of residence when they were highly transient.
A few care providers were cognisant of the financial pressures and other responsibilities on Indigenous patients who relocated to receive cancer care.
‘When [Indigenous patients] come in here sometimes they’re concerned that they don’t have any money, and my job is to reassure them that their accommodation and their meals are paid for. That sort of thing. But their problem is, it’s not so much their needs, it’s family’s needs for, and that sort of thing. So, family needs back home as well, with them being here.’ [Care provider, CP001]
‘[Indigenous] people are coming away from their communities – they have money issues, family issues, job issues, you name it. Let alone dealing with their cancer.’ [Care provider, CP022]
Appropriateness
The appropriateness dimension denotes the fit between service offerings and patient needs, including the interpersonal quality of the care, suitability of the setting and care provision, and the service’s ability to empower patients to actively engage with treatment.13
Almost half of the patients reported feeling lonely since their cancer diagnosis. However, the majority reported that they had someone to confide in and share feelings with about their cancer, with half of these reporting that they talk to this person daily.
Some patients expressed difficulties in their relationships with doctors’ and nurses’.
‘Balanda just doesn’t understand how it is with us. .. How frightening it is at the hospital, and meeting doctors, especially when they don’t have an escort with them.’ [Patient interview]
Another patient described their dissatisfaction with the way care providers had communicated with them about their prognosis via a discussion around palliative care options.
‘Doctor and nurse speak to me in a pessimistic manner. Need more positive feedback. "End of Life" discussion, brought up by oncologist, was not appropriate for Aboriginal patients.’ [Patient interview]
Care providers commonly reported having difficulty identifying when and how to provide emotional support for Indigenous patients. There is limited social work presence at the CTS-NT and Indigenous patients are rarely referred to counselling or psychology services as there was some uncertainty raised by care providers about the appropriateness of these services for Indigenous people. Social assistance and support for this patient group is usually channelled through the ILO. Several care providers expressed the views that Indigenous patients avoid talking about their cancer and would not be open to joining cancer support groups. However, it was suggested by one allied health provider that a more informal method of sharing stories and support might be beneficial for Indigenous patients.
‘…having some sort of social network where we could support them, … like, a barbecue in the ground or, like, a little billy tea bushfire or something like that. Something that they would normally do back home that they could do here, that would just make them feel that little bit more integrated.’ [Care provider, CP020]
Care providers regarded the high CTS-NT staff turnover rate as a challenge for building rapport and trust with Indigenous patients. While CTS-NT was described by some as having good staff retention rates compared with other NT health services, several care providers reported this negatively impacts on the consistency and quality of their relationships with Indigenous patients.
The amount of time spent in consultations with Indigenous patients was also reported to be longer due to the need to build rapport and consider cultural factors. Some clinicians offered patients the option to have their consults outside of the clinic on the grass and under a tree. This was seen by staff as a pivotal shift in the standard clinical approach and was regarded as fundamentally important when engaging with Indigenous patients.
“Half of my consults are under the tree … not even inside the building. Actually, when the patient comes in, I first ask them, do you want me to come out or do you want to come in? If the patient’s preference is for me to come out, I am more than happy to be under the tree.” [Care provider, CP010]
The physical environment of the CTS-NT was regarded by care providers as more welcoming for Indigenous patients than many other hospital settings, due to its size, location and outdoor amenities. However, the air-conditioning in the centre was attributed by care providers as a reason for Indigenous patients disliking and avoiding coming inside the service. The recent initiative of having a waiting room with painting facilities for patients to use while waiting for transport and appointments was described by care providers as being popular with some Indigenous patients.