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Table 1 Communication needs

From: The journey of aftercare for Australia’s First Nations families whose child had sustained a burn injury: a qualitative study

Lack of information causing confusion“… I think there is no information or good communication. Because like, you just don’t get, like we tried, some things that you don’t understand what they’re saying, you not getting no information … Like, you know, like with his hand. And then with Madeline,a I’m getting phone calls saying, this appointment from the clinic, to see the doctors, and then all of a sudden they postpone it, and then say, we’ve got the next one. But that’s not with the physio. So they do the physio and the doctor on the same day, and then they’re expecting us to go down there to see a physio but then the doctor keeps cancelling, I don’t know when the doctor’s going to see her, ‘cause they keep cancelling. It is sort of a mix up.”
“I was kept in the dark, and it was just the bits that Brita was feeding back and that I was reading her notes to get some of the information, but then trying to ask questions, it’s like, got to wait until the doctor comes. Doctor comes at 9 o’clock in the morning, I’m not there until 10 o’clock because I just – I can’t get up there, by the time I get the other kids organised, so, I’ve missed everything, and the doctors wouldn’t come back and speak to you because they were busy.”
Gatekeeping of medical informationNo-one would talk to us, no-one would tell us what was going on. It ended up going all night, where they went, “Oh, we don’t know what’s going on yet. We’ll leave it in the morning until the doctor comes in.” Finally, the doctor came in the next day... Yeah, and then he goes, “Oh yeah, yeah, we’ll get it sorted. We’ll have to probably send her to [the city] hospital. And we’ll get that organised.” Anyway, so it probably hit about lunch-time, nothing, heard nothing, like, what’s going on with the flights? What’s going on with everything? And they just kept going, “Oh, we don’t know, we don’t know, we don’t know.” And all this type of stuff, about two o’clock, I went, I can’t stand this anymore … This is ridiculous. They’re not telling me anything. They’re just fobbing me off all the time. So I ended up getting the contact numbers for the Burn Clinic [city hospital] and started contacting them myself. She [nurse from city burns unit] went, “We don’t have anything here for her. We don’t know what you’re talking about.” So then she got all the details over the phone and said, “We’ll admit her now. We’ll get onto the [country hospital] and we’ll get it sorted.” And within half an hour to an hour, it was sorted. The doctors come in and said, “Oh, we’ve just been in contact.” And I said, “No you didn’t. We just contacted them. The burn clinic has just rang you.” And they’ve all kind of went, “Oh”... But the country hospital were atrocious. Absolutely atrocious. I couldn’t believe it. They just left you there, you know. Yeah, it was just, like, horrible.
lack of patient/family centred care“And screaming the way he is, you know, and I said, “Are you sure you’re doing it right?” I used to bath him. I said stop it and just wait and let him cool down and they said, “You need to leave, Miss”. Yeah, didn’t like that much. You know I wish they’d be a bit gentle with how they go because they’re not the ones who’re burnt. Or feeling all the pain, and yeah like, as parents we’ve got to watch, and watch our kids go through that pain. But yeah, no one doesn’t want to be - no parents want to be put outside the room to let them handle your kids.”
“The doctor came in and said that they were going to take him into the room and pop the blisters and pull the skin off, but I don’t think the doctor realised a four-year-old understands that, so then he was absolutely, “No, it’s not happening, I’m not doing it,” We had to sort of say, “Now Bradiea, that’s not exactly what’s going to happen; you’re going to -” and so we had to explain it in a four-year-old way instead, so I think that they just don’t realise what age group they’re dealing with. Just being aware of the fact that that child could hear you. He can hear everything you’re saying. He’s not stupid, and he is four. So he knows, if someone’s going to pull his skin off, I can’t imagine what he would have thought after being burnt what they were going to do. I mean, the doctors probably could be more understanding of children – I know they’re run off their feet, but probably more educated on talking around the child, only because that was fairly traumatic for him when he sort of heard those small things that he could understand and he was just absolutely terrified and it escalated the situation when he was only just calming down.”
Medical jargon“[He] just keep doing his physio and OT (Occupational Therapist) to make his body and his muscles stronger … He has to wear these suits here, his protection burn suits to make his burns like smoother. They [medical staff] talk all these words and that’s gone straight over my head, you don’t understand what they’re saying you don’t know what they are doing next.
“Oh, yes, sometimes I didn’t understand what they were talking about, them words were too big medical words. I didn’t have anyone with me and I tried to ask the nurse she kinda explained it to me about more dressings.”
Lack of person-centred careI think the plastic surgeon that came down to have a look at him, he was on his phone talking to the other person [surgeon]; I thought that was a bit impersonal. I think if you’re going to do that, come in, check, go out and make the call then come back in. Don’t call when you’re standing in with the people; thought that was very rude. The surgeon could have come down and have a look and so you weren’t reassured, you were thinking, oh, he’s just sent his lackey down to have a look at you. Your kid who to you is the most important thing to you in the world you don’t know that there’s 100 other kids who are doing it, but they’re the most important thing to you.
  1. aNot child’s real name