Perceptions


 

The Child’s Right to be heard in the Healthcare Setting: Perspectives of children, parents and health professionals Ursula Kilkelly and Mary Donnelly Faculty of Law, University College Cork October 2006 >>>

 

‘Well, I’d say just bring stuff with you that you like, that would calm you down. Like if you have something that you can’t sleep without, bring that with you. Just have stuff to calm you down and stuff to stop you crying.’

girl aged 9

 

‘I don’t actually mind staying in hospital as long as I know that I’m safe.’

boy aged 9

 

‘It’s kinda got worse as you’ve got older like, because the rooms are quite tiny and there is not much you can do, and like there’s not much in the place to do anyway, like years ago there used to be a pool room and we used all go down and sit in that, but now there’s nothing.’

boy aged 12

 

‘Because you come in for a visit the day before you come in, they show you all the stuff and there’s two dolls called Tara and Ben. And my Ma’s name is Tara and my little sister’s Da is Ben. They show you everything that they do, like they put cream on you and all. The girl from the playroom showed me the cream that they put on you and the thing that squeezes your arm to check your blood pressure and the thing that’s put on your finger. It’s better to come in before, to see what you are going to look forward to and what are the good points.’

girl aged 10

 

‘He broke it down into English words, like he explained to my Mam in medical words, but then he explained it to me, like he explained what the words meant and all that to me.’

boy aged 14

 

‘Yeah, they did involve me because they talked to me a lot. I just thought I would have been in here and they would have just explained it to Mam, but like it was a regular thing that they were explaining to me and bringing me into all the conversations as well.”

boy aged 14

 

‘I asked her, “What do you mean, probably be an injection?” and she said, “Oh yeah, you get an injection”. So I said, “I don’t like injections, I prefer a cannula”, so she said “OK, we will look into that”. So I went in and they scanned my head. After a few minutes he came back and he was about to just inject, so I said, “Hey,

hey, what are you doing … I said no, I prefer a cannula” and he said, “Are you sure?” and I said, “Yeah, I don’t like injections”.’

boy aged 18

 

‘The nurse keeps coming in and out, but you see I wouldn’t know which doctor to go to because it could be a doctor that doesn’t know anything about the patient or it could be a doctor that knows everything about you, but I wouldn’t know which was which. It’s a lot easier to ask a nurse because a nurse keeps coming in to me and asks am I OK and how is your stomach and stuff, so I know that she knows about my thing, so I just ask her the questions.’

girl aged 9

 

‘I’d probably be a little shy. I don’t know him very well. If he was a friend and if I was to see him every day, I wouldn’t be shy … I sort of leave it to my parents.’

girl aged 9

 

‘It’s nice having the same person again and again because you kind of build a relationship and you get to know them. I think it’s good to build a relationship with the doctors and be open to each other, and when they come to you and just be friendly, because if you’re friendly with them and be open to them and make jokes and stuff like that, that’s when you get to really know what’s going on with you.’

boy aged 18

 

‘No, I don’t want to know bad things. I don’t want to be told bad things because it might make me really sad and scared, so it’s better that my mum only tells me the good things.’

boy aged 10

 

‘I’d tell my aunt to tell her [the doctor] again today when she comes up. The thing about it is, I’m really anxious to know what it is and it’s really hard for me to like get some sleep and deal with the pain as well, wondering like what’s inside me, what’s wrong with me. I just wish somebody would tell me that.’

girl aged 13

 

‘I’d rather me Mam and Dad because you’d understand them more than the doctors, because the doctors leave you without an answer.’ Another boy aged 12 said: ‘Yeah, I think like if the doctors and nurses were to speak to us all together and then if you didn’t understand something, your parents could like break the words down in an easier explanation when they’ve left.’

boy aged 11

 

‘I let my mummy ask the questions and she tells me. I prefer them to talk to my mummy and my mummy can tell me. Sometimes I don’t understand what they are talking about; they use big words so I don’t ask because I don’t remember the words sometimes.’

boy aged 10

 

‘Yeah, like the doctors asking your mum “Does he feel sick or anything?” and your Mam is there saying, “Ah no” and you’re like there saying, “Yeah, I do”. But you’re afraid to say it because your Mam is just “No, you aren’t, you don’t feel sick at all” and you’re like, “Yeah I do”.

boy aged 11

 

‘Like, when my mam was talking to the doctor, I said what’s this all about and she just kept on talking and nobody listened to me and I kept saying it loads of times and she said “Shhhh, I’m talking”.’

? aged 13

 

‘They just tell you. They’d use big words and I wouldn’t be able to understand them and then I’d ask my father what did they mean and he wouldn’t really tell me. My father wouldn’t tell me really half of it. I think it might be bad news then or something like that because if the doctor is talking for nearly 15 minutes or so and your father only tells you a couple of seconds, then there has to be more in the story. It makes you kinda worried.’

boy aged 11

 

‘When the nurses are talking to your mum or dad or the doctor, you’re like why am I stuck in the middle of this. I’m the one sick, why aren’t they listening to me. Why are they talking to my mum and dad, why aren’t they talking to me? I’m the one that’s sick, they should be asking me the questions.’

boy aged 13

 

‘Yeah, they talk to Mummy a lot. They like ask me my age, but they never really talk to me, they never tell me like, as I said, most of them don’t tell me what they are going to do and how long it’s going to take and when I’m going to see them again.’ Similarly, a boy aged 11 said: ‘Well, they talked more to my parents because they’d just come into the room and say “Hello, David [pseudonym], how are you?” and then they just start talking to my father and then just say goodbye.’

girl aged 9

 

 

‘It felt like it was her [child’s mother] having the operation and not me. It’s not her that’s having the operation and I’d like to know a little bit more about it.’

girl aged 9

 

‘They just tell you, they don’t explain everything. The first time I was getting PFT, I didn’t know what it was. I hadn’t got a clue what it was. He didn’t say it when I was there. He said it to Mam behind the curtains. I was upset because I don’t know what it’s for or anything like that.’

girl aged 17

 

‘I’d like him [the doctor] to come in and talk to me and tell me everything that’s going to happen because sometimes he tells me to go out of the room or something when he’s talking.’ boy aged 11

 

‘He kept having to talk to Mam on her own and I was getting really worried like because if they want to speak to Mam about something, either it’s because they need to do something really bad or something’s bad happening. I need to know because otherwise I’m going to be sitting there panicking, going all paranoid thinking about the worst scenario and everything.’

girl aged 13

 

‘I’d like them to explain it more because it makes the children feel braver and more involved.’

girl aged 9

 

‘Because if it’s about me, then I should be part of it.’

boy aged 12

 

‘I think the children should get the opportunity to tell what they think it is and not just what their parents or the doctors think it is.’

boy aged 13

 

‘They didn’t really explain much’, while another boy aged 12 said, ‘This morning they were talking to my parents and then he [the doctor] was talking to the nurse, and the nurse was writing it down and I was kinda getting lost like, but nobody would explain it to me. I had to ask myself. He wouldn’t explain unless you asked.’

boy aged 9

 

‘One time I was going to the doctor and I wanted to ask him something about my ear. He was talking to my mammy and then when he was finished I asked a question again when we were leaving and he never answered me. It made me feel that you don’t want me to be asking that question, you don’t want me to know what that is.’

girl aged 9

 

‘I didn’t know as much because I was afraid to ask questions. I’d say he’d just probably be too busy and I might distract him’

boy aged 13

 

‘I was a bit scared to tell them. I think they’d start to laugh at me’. Another girl aged 15 said, ‘Yeah, and sometimes I don’t understand what it means and I just leave it. I’d be afraid to ask what it meant. I’d just feel stupid’

girl aged 7

 

‘I wouldn’t have the guts to say. I don’t know, he comes across as a very intimidating man’. One boy aged 13 said, ‘If you were asking loads of questions, they’d get annoyed. “You weren’t listening, you should have listened”. They’d keep getting annoyed if you keep asking them questions, so then you just stop and stop asking them questions’

girl aged 17

 

‘Nearly all the time the doctors are in a rush’. Another boy aged 17 said, ‘The last time Dr. Kerry [pseudonym] came in to me, he stuck his head in the door. “How are you doing? OK, bye.” That’s it and he walked off and I haven’t seen him since. That was on Thursday’

boy aged 11

 

‘It’s like don’t interfere when adults are talking.’

‘Yeah, this is adult conversation, don’t get in, don’t get all hurt, and don’t interrupt.’

‘Yeah, I will tell you later.’

‘But then they don’t and then you are afraid to ask again because you think they’re going to say, they’re going to give out, “You asked that question earlier on”.’

‘It’s like don’t be rude and interrupt us and all that.’

‘When you don’t realise that you are actually rude, you just want to know what’s going on.’

three boys, aged 11-13

 

‘If you keep being on them and asking all these questions, they are going to get annoyed and they’ll tell you anything, so you shouldn’t really ask them that much, ask them a few times, that’s it. Yeah, because they have to do their job and you just have to wait until they come to you and if you wait they’re much nicer to you.’

boy aged 11

 

‘I’d just be a bit nervous. You can’t exactly tell a doctor that I want this or will you do this. I just go along with what they’re doing or whatever.’

boy aged 11

 

‘The doctors should listen more. I’m not saying that they don’t listen, I’m saying that children should have a say. Like the other day, the doctor put me on big tablets that I couldn’t take. It would be good if he asked and then they had to change the tablets into medicine, but it would be good if he asked me was I able to take the tablets, instead of him telling me to take the tablets which I couldn’t take. He could have told me, he could have asked me a question, it would have saved time, “Can you take them?”, except he didn’t.’

boy aged 12

 

‘I’d say I don’t know what you are really talking about there and as soon as I said the first bit of it, he’d [the doctor] just start talking over me and we were like “Will you listen to me or something!” They don’t listen to you because you’re too young, because they think you don’t know what you’re talking about.’

boy aged 13

 

‘One time when I was sick and I was in one of the rooms and the doctor told my Mam that every morning I’d wake up saying what will I complain of next. That wasn’t the case.’

girl aged 14

 

‘Yeah, you feel like you are ignored sometimes, laughed at by everyone, like you’re asking the nurse a question and she was there, she was like, “I’m with someone else”, and you feel like you’re being ignored with your pain and you feel no-one is listening to you.’

girl aged 13

 

‘Yes, like tonight I was worried. I can’t move and can’t get up and open the door, like what if I was so much in pain I can’t handle it, what is going to happen next. I go stiff, I can’t move, I can’t get off the bed, and if there is no-one in there, then I won’t get any help for a while. I think those buzzers are really important.’

? aged 18

 

‘Because sometimes they have work to do and sometimes they have business with someone else and you don’t want to disturb them. Probably I’d just wait or do it yourself.’

boy aged 7

 

‘I was a bit nervous because I didn’t know what was going to happen to me or anything. Well, I just thought they were talking about what they were going to do, but I didn’t really know what they were talking about exactly. Sometimes when you go down, they have this tray of knives and everything and you think, “Oh my god, what are they going to do, are they going to cut me up or what?” So if the doctor doesn’t describe it to you, you don’t really know what’s going to happen.’

boy aged 11

 

‘Let the children know what they [health professionals] are doing and what they [the children] are going in for, and not to know at the last minute, so they can think it over what they are having done to themselves. You can’t even think in an operation, you’re having anaesthetic to put you to sleep, you’re sleeping, you’re not thinking, you don’t know, you don’t think it over.’

girl aged 9

 

‘I got this book about what it feels like, but when I started to read it they came in and they started to put it down [nasogastric tube] so I didn’t get any time to read what it would be like.’

boy aged 9

 

Girl: ‘Some of them would come around and wouldn’t put cream on and …’

Boy: ‘Stab you in the hand with the needle.’

Girl: ‘Stab you and you’d be sore and be bruised. I’ll never get used to blood tests, I hate them, yeah, I hate them.’

Boy: ‘Actually getting bloods done hurts more than getting a cannula in.’

Girl: ‘It’s just because you’re poking around for the blood.’

both aged 17

 

‘Like, small, if they were to ask you “Do you want tablets or medicine?”, yeah, of course, you can make those decisions. It’s your body, you should decide what you want to do.’

girl aged 13

 

‘Small and big [decisions]. If you wanted medicine, like if you’re only having a little operation and a cut gets infected, that would only be little … and big would be like an operation that was life-threatening.’

girl aged 10

 

‘Well, my Mum said is it really painful and I was just like, I was in loads of pain so I was like yeah, it’s really painful. She goes do you want to, we can go to the hospital now and it might be something so simple that they won’t have to even look at you without knowing, so we can just go in and just make sure you’re OK and I was like yeah, because I didn’t want the pain to go on because it was actually so painful. I couldn’t explain it, I thought I was dying, so she did consult me and I did agree with it because I didn’t want to go on with the pain.’

girl aged 13

 

‘Probably yeah, because knowing me I’d be afraid of the pain, so I would tell them not to do it, but it would be of benefit to do it so it would be best for someone else to make the decision for me because I would probably end up in an awful lot of pain.’

girl aged 13

 

‘I wouldn’t really like them to do it [insert nasogastric tube], but they kinda have to do it because it’s helping and they have to help you really. It [the decision] should be their’s [the doctors], but sometimes you might not want it, but sometimes they have to do what’s kinda bad, sometimes they have to do what’s bad … it should be their decision really. Sometimes you have to do something cruel just to actually do something nice.’

boy aged 13

 

‘I think I would leave it to my mum and dad … like kids are just too young to understand what’s right and what’s wrong, like about medical situations they should just leave it up to your parents and doctors until you get old enough where you can make those decisions.’

girl aged 12

 

‘I think it’s my decision. I never heard anyone saying do you want me to do this or not, and it’s not their decision, it’s not their bodies they are doing it on, it’s mine and other children’s, that maybe we don’t want it changed.’

girl aged 9

 

‘Yeah, I think I can make my own decisions and probably sign my own consent form when going for the biopsies. I think that I do have rights to make some decisions.’

boy aged 18

 

‘No, I came back a few days after and I said I’m not feeling well, I’m not going home again early and I stayed in for three weeks the last time. I’m not going home until I feel I want to go home and then he said OK. He got kind of surprised and looked and I said, “I’m going home when I feel like going home, alright!” ’

boy aged 12

 

Giving Children A Voice Investigation of children’s experiences of participation in consultation and decision-making in Irish hospitals Dr Imelda Coyne Ms Eilis Hayes Dr Pamela Gallagher Ms Geraldine Regan School of Nursing, Dublin City University September 2006 >>>

Children’s definition of a good health professional

“Children interviewed were asked what they thought were important characteristics of doctors, dentists and nurses. Their answers revealed a lot about their experiences of these different professions and also highlight the importance to them of being treated by health professionals that are good-humoured, sympathetic and speak to them in language they can understand. Children of all ages readily identified the characteristics of a good doctor as one who spoke to them and explained things to them in language they could understand. For example, Larry, aged 8, described that a good experience at the doctor’s was ‘when they ask you stuff’ (CGI 6). Harry, aged 11, noted that a good doctor ‘asks the children questions’, while Emmet, aged 10, said a good doctor ‘explains things to children, tells them what’s wrong with them’ (CGI 6). Trevor, similarly, noted that a good doctor ‘explains stuff to you’ (CGI 12). The importance of a child-centred perspective was also identified as an important characteristic of a good nurse. One boy, aged 10, had a clear idea of what a nurse should be like, saying a nurse should ‘know what a child would want in a situation. Say I’m going to have something like an injection, try to make sure to tell the parents to just [relax] the child or something and try to make it not hurt’ (CII 8). Children also identified the importance of kindness on the part of their health professional. One boy, Aidan, aged 9, noted that a good doctor is one who is ‘kind to you’ (CGI 5). A girl, aged 10, who had had a high level of contact with the health system, thought that doctors should be ‘healthy’ and ‘friendly’ (CII 8). Trevor, aged 12, also felt that a good doctor was ‘someone that’s funny, because our doctor is always cracking jokes’ (CGI 12). Cathal, aged 11, said a good doctor was ‘someone who doesn’t hurt you’ (CGI 12), while Cormac, also 11, said that he wanted a doctor to be ‘understanding’ (CGI 10). Aine, aged 12, said a doctor should be ‘kind and funny’ because ‘you really don’t want to be around a doctor who is quite serious and … a bit angry and doesn’t want to talk to children that much. You want a friendly doctor who wants to talk to children’ (CGI 11). Geraldine, aged 10, also thought that doctors should be ‘friendly and kind’ (CGI 11), while Kate, aged 13, said that your doctor should be ‘someone you can trust’ because ‘you don’t want anyone that you don’t trust trying to look after you’ (CGI 11). In contrast, Dermot, aged 13, complained about one doctor he had encountered: ‘Well, it’s not that he wasn’t very nice. I’d say he was just tired … he was … looking down … and wouldn’t be looking at us and he was kind of mumbling. If you asked something, he’d snap at you’ (CGI 11). Cormac, aged 11, also complained about a doctor who was rude to him, which he did not like (CGI 10). 44 Finally, the health professional’s physical appearance and the first impressions created are clearly important to children. As Dermot, aged 13, explained: ‘Maybe if they didn’t always wear a uniform or a suit …’ because ‘they look very serious’ (CGI 11).”

http://www.dcya.gov.ie/documents/research/The_Childs_Right_to_be_Heard_in_the_Healthcare_Setting.pdf

http://www.dcya.gov.ie/documents/research/The_Childs_Right_to_be_Heard_in_the_Healthcare_Setting.pdf

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We are all mental patients. Few of us enjoy perfect physical health all of the time, and the same is true of our mental health. One in four of us is suffering from mental-health problems — from mild depression to full-on paranoid schizophrenia. It’s all around us, every day. Why supermarket chains, Tesco and Asda, thought it was acceptable to sell ‘mental-patient’ Halloween costumes is baffling — would they sell, say, inflatable wheelchairs, or joke dialysis machines? Not likely — there would be outrage. We don’t mock physical problems, but it’s okay to laugh at mental illness? (Examiner) >