Interviewees described the importance of maintaining social and cultural connections while receiving care in hospital. The environment and process of health services, and responsiveness of staff to personal and cultural needs, particularly during difficult times, impacted significantly on patients and carers and their perceptions of care. The major themes are summarised in Table 6.
The importance of family
Family as companion, support and buffer.
Keeping connected with family at home.
Family members in the city-a vital connection.
Coping with diagnosis or illness
Coming to terms with an injury, diagnosis or treatment.
The frustration of waiting for treatment and dealing with symptoms.
Death and dying
Cultural and personal aspects of preparation for surgery and treatment.
Importance of support when a patient dies.
Systemic racism, post-colonial realities
Racism and colonisation.
Stereotyping reinforces discomfort.
Repeatedly, Aboriginal country patients and carers discussed the importance of family in their lives and at times of distress or ill health. Many patients preferred to have (and some relied on having) family members with them in hospital for company, advocacy, emotional support and physical care.
Patients valued the emotional and practical support and comfort provided by family:
It's important if anyone goes up for any treatment that they've got support people around them because it makes a lot of difference... otherwise you're sitting there by yourself... thinking a bit more about it too, whereas if you've got someone else, there's conversation (P12).
My daughter and husband was there so it didn't take me long to get better after that. A couple of weeks I was right, came home (P6).
For some older women it was important to have a female family member or carer with them when they were in single rooms because they never slept alone at home and there were always other women nearby.
For those in Adelaide for outpatient care, family provided vital after-hours physical care for applying treatments and mobility assistance:
It was good to have my mum there helping out as well... putting the cream on... washing all my clothes everyday (P12).
I would rather have my daughter shower me than someone at the hostel (P4).
For one man, having his wife present helped him cope (without retaliating) with interactions with staff whom he found negative and racist:
If my wife wasn't with me the day that Dr... called me a drug addict I probably would have punched him and I'm telling you now that's a fair dinkum fact... but she just put her hand on my lap because she knew the moment he said that, that I would have lost it (P1).
Patients and carers stressed the importance of maintaining connection with family while they were in city hospitals. Five patients indicated that the most important thing staff did to support them socially and culturally was to ensure that they had access to a telephone to call family:
I think the most important thing is being able to keep in contact with family. To have a phone near the bed if you are on bed rest. If people are from the country and don't have family around, staff need to bring the phone in when family call. You do need contact with family; a lot of us have no family in town, so it is all by phone (C2).
Patients appreciated telephone contact with family even when they were extremely unwell:
At that stage [I was] very ill and I didn't really need a lot of people coming around, trust me... They had a phone beside my bed and I could speak to people, which was good (PC20).
Most patients were visited by extended family members (nieces, nephews, in laws, siblings, grandchildren) living in Adelaide. Two patients spoke of city family members visiting them while they were still in accident and emergency units:
My brother and sister and her husband came in to see me in [accident and emergency]. My son must have rung them when I went in the ambulance. It was good to see them (PC24).
When city family members visited patients in the wards they provided vital ongoing company and support:
My nieces in Adelaide came to visit. Family makes a lot of difference. If I was on my own I would be thinking, thinking. But when family and friends come and visit it is alright (P4).
the kids are ‘poppy, poppy' and you could see it in his eyes, you know, it sort of brightened him up too (C6).
Carers also identified the importance of extended family providing emotional and practical support for them while they were in Adelaide or regional hospitals:
My sister rang to see if I needed anything, I asked her to do shopping, I was in the hospital every day and just needed more things than the local deli could supply. I could get milk and bread there, but needed more (P&C30).
Many family members made extensive journeys to see patients in city hospitals. Some could only stay for a few hours, or visit when finances were available:
On pension day when they've got money they come down (P6).
Patients and carers spoke about the difficulty of coming to terms with an injury, illness or diagnosis. One patient recounted waking up in Adelaide following a car accident and Royal Flying Doctor Service retrieval:
I woke up and I was really frightened... The nurses were talking to one another and I can understand what they were saying to each other and I thought, I must have been hit by a car. And my family were ringing up from here and telling me too. Gave me a shock... I am lucky to be alive (P8).
Another woman discussed dealing with the complications of diabetes:
This year I have been going down to Adelaide a lot. I was really sick earlier, not wanting to bother with myself. I can't walk around and it was starting to get to me. I went down for test in Adelaide, and they operated on both of my legs [indicates amputated legs], and I feel better now... I asked myself, why did this happen to me? I don't smoke, I don't drink alcohol. Why? Maybe it is the diabetes (P4).
Another spoke of the long-term effects of having her teeth removed:
I'm a diabetic and I can't eat fruit and I can't have meat-so I just eat junk food because... it is soft and you don't have to chew. I think my weight's gone up again. My diabetes, my blood pressure-everything. And I'm on sleeping tablets because I can't sleep because of the stress (P9).
One carer discussed the difficulty of her husband's cancer diagnosis and treatment regime for both her and her husband:
Yeah, that's been a very difficult time, obviously the cancer stuff is a big deal when you first find out about it and then this whole process of ongoing treatment is quite difficult and time consuming (PC20).
Another woman spoke of wanting to prepare her children for a poor diagnosis she was given:
I try to tell them what the doctor says and get them to read the reports, what he wrote, but they don't want to listen... That's why I went and bought myself a funeral benefit (PC21).
Patients living in remote areas spoke of getting frustrated with blindness or incapacity due to delayed surgery and treatment. Others spoke of trying not to worry and to keep healthy and fit while waiting for a kidney transplant, of waiting to see if cancer treatments would be successful, and of dealing with chronic pain and disability:
All I want youse to do is give me a needle in the base of my back so that it kills the pain in the base of my back so then I can stand up properly and I don't need to be walking around cramped up... like a bloody old man (P1).
The focus group members discussed an important cultural aspect of preparing for a major operation or treatment. They indicated that discussions with family are needed before undertaking treatment that might be dangerous-family can come together and ‘make sure the person is spiritually strong and pray for them' (FG). This may mean that patients need to return to country after diagnosis and prior to consent to treatment. If the person cannot go home, family members need to visit them.
Two people spoke of their experiences of being carers for family members who died and the importance of staff support:
They told us in the city hospital that there was nothing more they could do. We wanted to bring him home and they transferred him to the local hospital... I took him home for about three months with help from palliative nurses... they gave me a bed in the hospital in the room with him so in the last-you know, we'd been together-43 years we were (C6).
Had to turn the machine off and that was hard, very hard. When I held her hand I just see this thing coming out of her body and it was white smoke, like a white light and it stopped up there for a minute and it just disappeared. Then everybody started to cry and I went and put my arms around them and calmed them down and wasn't even thinking about myself until I come home... She died in Adelaide and I had to bring her home then. I was looking after everybody else and calming them down and whatever else and the day they buried her I went crazy, I think it all just came out then (PC21).
Some years later this same person was called to the city to turn off her son's life support, and then her husband became ill. It was important for her that she and other family members were supported by hospital staff each time:
... the staff were good. They give me a room, they let all my mob stay in one big room and they were good to talk to (PC21).
Some patients and carers discussed how racism and colonisation impact on their lives generally and that even when they have good local relationships with the wider community, national issues may trigger racist or judgmental actions:
That's the worst part, that's the annoying part, they treat you all the same... we always mixed in. But then you do get... all this land thing [land rights] came out and I was walking down the street and there was a car load-they went past me saying, ‘you're not bloody getting my land', and I said, ‘what, I don't want your land'. They think, ‘oh, yeah, she's after that' (C6).
One patient spoke of past colonising practices and negatives ways of being treated in institutions and how this has affected her family's attitudes to seeking health care:
There were these boys... from the homes-they'd say, ‘sir, I've got a headache, can you give me something?' and he said, ‘I'll be right with you'. He got the pain killer and he put it on the kid's head and put sticky tape on there and said you're right now, your heads will stop hurting now... It's just some of the things that we experience... and the young kids, they've got a hate, a hate for non-Indigenous people... There's a lot of things that went on with Aboriginal people (PC22).
Some patients experience discomfort due to the actions of non-Indigenous staff and patients:
Yes, some staff are still racist, it's not across the board, there's just certain people-their attitudes (P1).
You can see that, like with the white patients, you know... they stare at us too many times but I've been telling a couple of them white people ‘stop staring, we all the same colour-we all got the skin, we're not animals' (P5).
But several patients were reluctant to label the behaviour of staff as racist. One person, when asked whether he/she thought bad treatment was race based, or if that particular staff member treated everyone the same way, replied:
I really don't know. I have mixed feelings about it. This is a question that as an Aboriginal person I find hard to define. It is often an immediate reaction, it is because of my Aboriginality. I try not to make a point of reading racism into it. At other times it is obvious, and you know it is. No, it was not really clear. I think maybe they were not nice to others too (PC23).
Some patients spoke of improvements in hospitals accommodating cultural needs and providing culturally safe environments:
Yeah, we're getting treated pretty good but it's just outside, you know (P3).
Patients and carers stressed the importance of having family nearby, or in contact via telephone. Family members provided patients and carers with much needed support-physical, economic, social, spiritual and emotional. Country family members travelled long distances to maintain contact. Some carers discussed extensive periods of time caring for family members, with past experiences influencing subsequent visits. They often made difficult decisions and encountered challenging times supporting family members during death and dying. Patients and carers also spoke of the struggle to come to terms with an injury, diagnosis or treatment, and the impact this had on their lives and wellbeing.
Some patients felt that there is increased attention to ensuring cultural safety in hospitals, although stereotyping still leads to discomfort for patients and carers.