Stories from cardiac patients, non-cardiac community members, health care providers and community researchers offered unique, converging or complementary perspectives which informed the development of a culturally sensitive matrix that articulates the factors influencing HCU amongst Aboriginal cardiac patients in central Australia (Figure 1). Our analysis suggests that barriers stem primarily from communication issues arising at all four levels (Individual, Interpersonal, Primary Care and Hospital System) and systemic barriers emanating from the Primary Care and Hospital System levels. Barriers experienced at the systemic levels impacted on the quality of care received by patients, reinforced Individual level barriers and created dependency on alternate support at the Interpersonal level. Although the study aimed to explore both facilitators and barriers to HCU, participants’ accounts indicate that Aboriginal cardiac patients face significant barriers to HCU. Quotations corresponding to the appropriate participant group are identified to support interpretive validity .
Individual level influencers
English was often a second, third or even forth language for many patients, whose first language was typically one of the local Aboriginal languages. Participants explained the need for information to be relayed in their own language to ensure accurate understanding of their illness and the medical concepts and terms used.
Staff’s inability to speak local languages enhanced patient’s feelings of fear, as they were being spoken to in a language they did not understand regarding important issues, such as their illness. Poor communication led them to misinterpret, or not fully comprehend, what was being explained or what they should expect.
“She gets frightened cause she doesn’t know what the doctor is talking about, you know. She might have to have an operation and she don’t know.” [Non-cardiac community member]
Knowledge of illness
Cardiac patients seemed to know little about their illness or signs and symptoms associated with having a cardiac event. Patients desired information but the limited nature of clinician-patient communication meant patients often stayed uninformed.
“I thought that they might find out what was wrong with me in [hospital], but they just said, ‘You’ll be fine, you’ll live a long time.’ That’s not much, you know. I want to know what’s wrong with me, inside my body.” [Aboriginal cardiac patient]
Most cardiac patients had no idea they were having a cardiac event. Their knowledge of the signs and symptoms of a cardiac event revolved around “typical” symptoms, such as chest pains. Having a limited understanding of their illness affected patients’ perceived need for HCU at the time of their event and following discharge.
Many patients believed they didn’t need to seek health services following their cardiac procedures. This was influenced by a lack of cardiac education and suboptimal communication between the health systems, clinicians and patients, and clinicians and patients’ family. Consequently, a prominent factor discussed amongst patients was the idea of being “fixed” or cured following a cardiac procedure.
“They opened for my blockage, oh, what, maybe a half an hour, fifteen minutes? They took photo of me first, you know, that blockage, and then when they opened them, those blockages, they took those pictures after. And then they showed me before and after. Before, it was all blocked and after, it was all clear.” [Aboriginal cardiac patient]
One patient referred to his angioplasty procedure as “magic” and disclosed that he had not gone to a follow-up appointment since his cardiac event, 7 months prior. Limited understanding of one’s illness and cardiac procedures affected patients’ decisions to seek follow-up care or take medication(s) to manage their chronic condition.
Aboriginal people’s oral culture was a powerful means of transmitting previous health system experiences to family and community members. Having had a significant other who accessed health services and subsequently died invoked a strong deterrent for HCU amongst surviving partners and relations. Many participants inferred a causal association between HCU and death, particularly when patients were transferred to interstate hospitals.
“Well, as soon as they hear the word [hospital] they expect…the worst. Cause a lot of family we’ve had down that way, have passed away. So they don’t really want to hear about [hospital].” [Non-cardiac community member]
Negative past experiences, language barriers, perceived racism, and a lack of cultural awareness contributed to Aboriginal participants’ mistrust in the health system. Patients did not fully comprehend their treatments or the western biomedical model and therefore ascribed the high levels of mortality amongst Aboriginal people to clinicians’ mistreatment.
“Cause a lot of Aborigine people passing away, you know, and they think that doctors are doing something to them.” [Aboriginal cardiac patient]
However, patients seemed to trust health care providers who had been around for a long time, as they had a better understanding of Aboriginal issues and knew how to interact with patients.
“You can tell the nurses that been in Alice Springs forever and those nurses that are new, you can pick it out just by how them talking to you. And mob people come to pick that nurse, keeping ask for that nurse.” [Aboriginal liaison officer]
Virtually all Aboriginal participants shared stories of fear in regards to HCU. Fears were fostered by multiple factors such as, clinicians’ poor communication skills and lack of cultural competence, impacting on participants’ uncertainty about the nature of their illness and treatment options, and negative past experiences. For some, the fear was so pervasive that they completely refused to utilise health services.
“… family friend, grew up with us, he had to go down to [hospital]. It was life or death for him, [but] he kept putting it off, he was very frightened. He was a very educated, highly educated bloke. By the time he ended up going down there [hospital], he ended up dying on the operating table.” [Aboriginal health worker]
HCU was also influenced by competing priorities, which included social issues, family obligations associated with Aboriginal culture and obligations to attend grieving ceremonies. Participants explained how individuals often prioritised family and community affairs ahead of their own individual health. Many women worried about leaving their children and/or grandchildren to go to the hospital. This was reflected in the converging perspectives of health care providers and non-cardiac community members.
“We try again to explain, you know, ‘you gotta think about yourself sometimes …you’re really sick, you gotta go [to the hospital].’ And a lot of response I get is ‘who’s gonna look after them [children] when I go?” [Aboriginal health worker]
Avoidance relationships guide social and personal interactions within the Aboriginal kinship system . Barriers to seeking care surfaced when patients were in a direct avoidance relationship with the attending Aboriginal clinician or liaison officer. Participants spoke of waiting for another staff member before using health services.
“Yah, I can’t talk if he’s my relation. He can’t tell me, but if he’s somebody else, then yes, he can tell me all the story of how he’s feeling and I’ll explain it to the doctor there. If he’s my cousin or something, he can’t tell me nothing.” [Aboriginal liaison worker]
Few cardiac patients or non-cardiac community members living in town camps or remote area communities possessed a telephone or vehicle. Non-cardiac community participants recounted stories of Aboriginal people who died prior to reaching the hospital because they lacked these basic needs.
“… then she died, that old woman, died right there … I brought her where she want to go [hospital], but nothing, she died in the car, that old woman I picked up along the way.” [Non-cardiac community member]
Interpersonal level influencers
Communication between clinicians and patients’ family
Family members were usually not involved in patients’ treatment because of the limited communication that arose between clinicians and the patient’s family. Participants stated that family members were typically not present during consultation or contacted when a patient was admitted, transferred to or discharged from a hospital.
“When someone is going to Adelaide, I [nurse] don’t consciously think, ‘Oh, does all his family know that he’s going to Adelaide?’ That is something we don’t, I don’t do. It’s something I actually haven’t even thought of.” [Health care provider]
As a result, many family members were unaware of the patient’s cardiac illness, the required medical procedures or follow-up care. Such communication issues are a concern given the benefits family involvement can offer, as emphasised by one participant:
“The benefits go back to the family because then the family understand what this illness is, the patient understands, and if the husband can’t understand English, the wife will interpret… and so, everybody can get that one picture of what the doctor talking about.” [Non-cardiac community member]
Due to the presence of communication issues and systemic barriers existing at the health system level, patients often relied on family and community members, kin or other patients for alternate support. Individuals providing alternate support, helped patients negotiate health services, acted as interpreters by explaining medical procedures and kept patients company during hospital transfers and admission. Alternate support played a fundamental role in encouraging patients to use health services.
“A lot of people don’t want to come [to hospital] unless they got family members.” [Aboriginal health worker]
Further, cardiac patients who had previously utilised health care services and who, therefore, had some knowledge of how to negotiate the health care system, also acted as a form of alternate support.
“When I got down there [hospital], I slept at residence wing because I knew where to go now. There were some other people from out bush and they didn’t know where to go, so I said ‘Just follow me, I’ve been here before.’” [Aboriginal cardiac patient]
Primary care and hospital system level influencers
Given the similarity of influencers operating at the Primary Care and Hospital System levels, they are presented in a combined section, below; when an influencer operates at only one level, that exception is noted.
Communication between clinicians and patients
Miscommunication frequently occurred between clinicians and patients. Clinicians often explained the nature of participants’ illness, cardiac procedures, and medications using complicated medical jargon. Participants explained that they desired information be communicated to them clearly and expressed frustration at not being able to comprehend the information relayed to them.
“Well, sometimes I can’t understand them, they talking that type of language they learnt in medical school, you can’t, you don’t know that. I tried to look up a few words in the dictionary; it’s not there, it’s just not there.” [Aboriginal cardiac patient]
Health care providers also acknowledged this gap in communication, highlighting the additional challenges involved when a common language was not spoken.
“I don’t think the majority of the time when I explain things to people they understand at all what I’m telling them.” [Health care provider]
One health care provider explained that communication skills were not commonly taught in medical school; instead, it was something that developed with experience.
“Actually the best thing is ‘now you tell me, repeat back what you understood, and ’have you got any questions?’ and…‘do you want me to talk to family?’ and that only comes, I think, with exposure and learning. I think that’s something as medical professionals, as doctors, we don’t get taught.” [Health care provider]
Absent or inadequate explanations also affected patients’ understanding and adherence to prescribed medications. This meant that patients were often sent home without a clear understanding of how or when to take their medications.
“I take my tablets, don’t know what tablets they give me, the nurse just got tablets for me from pharmacy and sent me home. They supposed to be giving you tablets and you know, telling you what to do when you get back home and all that, but nothing.” [Aboriginal cardiac patient]
Communication between the primary care and hospital systems
In many instances communication between the health systems was compromised, impacting on patients continuity of care. Patients’ medical records were not routinely transferred to primary care services or hospitals and health care providers described acquiring patients’ medical records as “rare” and “a big bonus”.
“The cardiology team down in Adelaide often say ‘follow up by the cardiologist… [in Alice Springs]’, and it never quite gets communicated for whatever reason, and so suddenly you find six months later that this patient has not been seen by anybody.” [Health care provider]
As further expressed by Aboriginal cardiac patients and family members it was not uncommon for patients to receive cardiac care in Adelaide, return to their hometown in Alice Springs and fail to receive follow-up care.
Wait times and inflexible hours
Long waiting times and inflexible hours often deterred patients’ decisions to use health services.
“What you find is that Aboriginal people get up and walk out. They’ll wait maybe five or six hours and then say, ‘Ah stuff this, I’m going.’” [Non-cardiac community member]
Intake procedures (exclusive to Hospital System level)
Participants often experienced problems scheduling appointments and with necessary accommodation; in some instances, the receiving hospitals were unaware that patients were being transferred to them.
Continuity of care (exclusive to Hospital System level)
Poor management and communication issues between the health systems were identified as contributing factors to poor continuity of care. A lack of, or inadequate, discharge summaries meant that clinicians were unaware of patients’ diagnoses and previous treatment(s), inevitably affecting follow-up care. Furthermore, poor organisation contributed to patients’ difficulties in obtaining their test results. Patients were uncertain of their health status which delayed necessary treatment(s) and lead to participants considering HCU a “waste of time”.
“There was no appointment made for me to go back to hospital. I don’t even know what my results was. I went to [primary care service] and told one of them doctors over there and he was following it up for me… this was a few months ago now.” [Aboriginal cardiac patient]
As explained by a health care provider, patients seemed to fall in a “black hole” following their cardiac procedure with few receiving specialised follow-up care. These negative experiences reinforced mistrust in the health system and consequently deterred HCU.
Availability and delivery of health services (exclusive to Hospital System level)
“Escorts” are family members or kin who accompany patients when transferring to, or leaving, a hospital. Their involvement improves patients’ agreement to being transferred to tertiary hospitals. Escort policies were limited primarily to underage patients or those with special needs. Restrictive escort policies and resource constraints often impeded escort eligibility, impacting patients’ decisions to seek tertiary care.
“That’s why, you know that stuff when family members can go with them [to hospital], it’s really important, otherwise you wouldn’t get half of what you get now, and you probably don’t even get most people now! You know, with that family member, more likely that they’ll go.” [Aboriginal liaison officer]
One health care provider explained that limited escort eligibility was largely due to minimal resources available to patients, proving it even more challenging to accommodate family members. High demands and limited resources meant patients often had to fly alone.
“There is a limited resource and we haven’t got unlimited number of planes. And I guess that’s where a lot of the pressure comes and why a lot of people [escorts] get refused.” [Health care provider]
The escort systems’ guidelines were not adapted to meet Aboriginal people’s needs. Consequently, particular issues, such as language barriers and patients’ fears associated with travelling alone were neglected.
“These are special circumstances and I think they’ve been forgotten” [Health care provider]
Limited availability of cardiac services in remote communities meant many patients did not receive appropriate care. The lack of a cardiac unit and minimal cardiac specialists in remote areas and in town acted as a significant barrier, impeding HCU. Absence of cardiac services affected cardiac patients’ continuity of care; some participants described cases where patients refused treatment in town so they could return to their family in remote area communities.
“They have to come to town to get treatment. I’ve seen people give up, go back to community, and die.” [Aboriginal health worker]
Cardiac patients stated that they were often afraid of and/or anxious about undergoing necessary cardiac procedures because procedures were not properly explained. Cardiac education was limited to watching a “very westernised” angiogram video. A cardiac patient described their experience during an angiogram procedure:
“They shaved my groin but they never done the test through the groin. They done the test, they put the tube through here (pointing to wrist and then elbow) and I didn’t know what to do. I was full naked on a big operating bed, just with a blanket over me and a plastic over my arm, and I was thinking, if they want to do something with my arm, then why am I full naked?” [Aboriginal cardiac patient]
An important part of the post discharge management of cardiac disease is enrolment in a cardiac rehabilitation program where emphasis is on secondary prevention and health education. However, cardiac patients described receiving minimal or no cardiac education following their discharge. Health care practitioners also described the limited cardiac rehabilitation available:
“I think at the moment there is 15 hours of cardiac education a week, for the whole of Alice Springs. So that’s 200 events a year, 15 hours.” [Health care provider]
Minimal information was available for cardiac patients to understand their illness, their medication and required lifestyle changes to prevent subsequent cardiac events and other related co-morbidities. This reinforced individual level barriers such as patients’ knowledge of their illness and negatively influenced perceived need for HCU.
Most participants did not own a vehicle. Although a bus service was provided by primary care services in town, it was highly inadequate and unreliable. At the Hospital System level, patients arriving at Alice Springs airport from Adelaide stated that no hospital transportation service was available to them; patients were often left stranded and unable to return to their homes.
Non-Aboriginal health care providers received minimal or no cultural awareness training compromising the quality of care provided, their ability to effectively communicate with Aboriginal patients and adapt services to meet Aboriginal patients’ needs.
“Some of the resident doctors out bush tried to develop a better orientation with cultural mentorship. They have someone in the community responsible for teaching them about cultural aspects which is so much more appropriate [but it takes] more than one day. Well, if you are not here for more than a few weeks, off you go, you’re done and you’ve had no [cultural] training.” [Health care provider]
Issues with cultural appropriateness were exemplified by the health system’s inability to provide gender-appropriate care, which is highly regarded amongst Aboriginal people, inevitably deterring HCU when not available.
“If a male wants a male, well, then a male doctor gotta see that person. You know, that’s what I see all the time. When that old lady talking language, I hear her, I just tell that [male] doctor, ‘She don’t want to see you, she want to see a female doctor’”. [Aboriginal liaison officer]
Cultural oversights impacted upon patients’ negative past experiences and mistrust of the system, reinforcing individual level barriers.
Aboriginal liaison officers
Aboriginal liaison officers (ALO) - government-funded interpreters and cultural workers- represent one solution to clinician-patient language barriers and help reduce patients’ fears and anxieties.
“The liaison team explained what’s gonna happen and said he’s [ALO] gonna be there for them, so then they jumped in the car and went.” [Aboriginal liaison officer]
Although ALOs were described to facilitate HCU, they were rarely available.
“Especially that emergency department too, hey? There is not one interpreter there… and [patients] can’t understand, they’re just nodding their head.” [Non-cardiac community member]
Converging storylines arising from the narratives suggested that greater resource support was needed to increase ALOs availability. Health care practitioners also described the absence of standard guidelines to determine if, or when, a patient required an ALO.
“You can’t have an interpreter there all the time. It’s only for important things, like when you know, you are going to chop someone’s foot off.” [Health care provider]
Racism was also perceived as a factor influencing HCU. Almost all Aboriginal participants described feeling as though they were not offered the same health services as non-Aboriginal patients.
“It’s ‘You do it this way’, ‘This is the best treatment for you’ and a white person will come in with the same thing and it’s ‘You got this choice and you got this choice, what do you want to do?’”[Aboriginal health worker]
This was also described by a health care professional:
We certainly use [interpreter services] well enough if it’s a European that comes [to hospital]. A German speaking person…we automatically go get that [interpreter services] straight away or find someone to do it. But if we want a Pitjantjatjara, or an Alyawarr speaking person, you know, we can use the interpreter speaking services, but we don’t. [Health care provider]
Further, ambulance drivers’ resistance to pick up patients living in town camps or remote area communities depicted a strong example of institutionalised racism.
“There is a lot of stigma from the health service providers about entering into town camps, especially at night time.” [Non-cardiac community member]
Aboriginal participants felt that their treatment was affected by widely held stereotypes about Aboriginal individuals:
“People think that ALL Aboriginal people drink [alcohol], that’s why we get treated the same way, as the drunks in town.” [Non-cardiac community member]
Discrimination could be sensed as reinforcing individuals’ mistrust and negative past experiences with the health system.
The Western biomedical model
The health care system’s emphasis on the western biomedical approach to health care was perceived to negatively influence HCU by Aboriginal people. The illness focus of this model was viewed as not able to account for social, psychological, cultural or behavioural dimensions of health relevant to Aboriginal people. It was seen as conflicting with Aboriginal people’s holistic notion of health which emphasises relationships between people, places and things. Patients and community members expressed concerns over the perceived lack of attention of clinicians to building relationships with patients.
“You need to develop a relationship, make it about people, gain trust.” [Non-cardiac community member]
Health system support
Some patients and community members reported that the health system did not acknowledge the living situations and cultural aspects of Aboriginal people’s lives, and thus, could not adequately support their needs. The system was described as “top-down,” with Aboriginal people uninvolved in health service development and implementation.
“Giving people the power to be able to say, ‘Well, we want this’ and then resource those ideas. Putting the money behind what the people themselves are saying, not listening to white fella, who don’t know nothing about Aboriginal people.” [Non-cardiac community member]
Aboriginal participants stressed the importance of having a sense of ownership and involvement in the development of health services targeted towards them, to make them effective and functional within the community.
Quality of care
Communication issues arising on all four levels and health system level barriers presented at the Primary Care and Hospital System levels contributed to sub-optimal quality of care for cardiac participants.
Lack of enabling factors (or inhibiting factors) predominately influenced HCU at the Primary Care and Hospital System levels, while predisposing factors primarily influenced Individual level factors. The presence of an enabling factor, Alternate Support, at the Interpersonal level linked the health system and the individual, thereby facilitating use of health services. HCU is a function of all these factors, acting either separately, or in combination. Negative experiences or barriers to HCU impacted on the quality of care received by Aboriginal cardiac patients, affected individuals’ subsequent decisions to use health care services and health outcomes.