Plain English summary
Introduction
Sampling logic
First iteration
Methods
Results
Second iteration: focus group discussion with paediatricians
Methods
Results
Third iteration: online survey of paediatric research experts and paediatricians across Australia
Methods
Results
Fourth iteration: child-parent interviews at the women’s and children’s hospital’s paediatric outpatients department
Methods
Results
No | Age | Child’s gender | Mother/father/guardian | 1st language | Parent’s report of presenting complaint/possible diagnosis | Problem 1 | Problem 2 | Activity |
---|---|---|---|---|---|---|---|---|
GM1 | 7 | M | Mother | English | Behavioural problems | Happy | Not sure | (Left blank) |
GM2 | 10.5 | M | Mother | English | Sleep apnoea | Not getting work done | People calling me names | Get 200 tasks done |
GM3 | 8 | M | Mother | English | Auditory processing disorder & dyslexia | Sore toe | Learning, auditory and sensory processing diagnosed 3 months;1 year ago had for at least 1–5 years | No |
GM4 | 8 | M | Mother | English | Obesity & behaviour issues | Being blamed for things he hasn’t done | When things are hard to do | Unable to finish school work |
GM5 | 10.5 | F | Mother | English | Enlarged liver, raised liver function, increased IgE level | Bullies at school | Bullies get rewarded for bad behaviour | Swimming because of my eczema |
GM6 | 8 | F | Mother | English | Follow-up | Not allowed to have too much lollies | When I fall down and scratch myself | I can’t play on the monkey bars |
GM7 | 7 | M | Mother | English | Asperger’s | My sister annoys me | I want to have a normal break at school | Playing on Xbox 360 |
GM8 | 8 | F | Mother | English | Diagnosis of small height and weight | Noise issues | (Left blank) | Doesn’t stop me |
GM9 | 8 | F | Mother | English | Migraines | (Left blank) | (Left blank) | (Left blank) |
GM10 | 10 | M | Mother | English | Autism | Getting off the internet | Going to school and doing work | Is to find it easy to learn |
GM12* | 10 | F | Mother | English | Cerebral Palsy | Cutting my hair | Go to sleep | School |
GM12a* | 11 | M | Mother | English | Asthma | (Left blank) | (Left blank) | (Left blank) |
GM13 | 7 | M | Mother | English | (Left blank) | School | Stomach | Football |
GM14 | 8 | M | Mother | English | Mozaki Chromosomes | Fight | Mum hard at act | Stop getting angry |
GM15 | 10 | F | Mother | English | Seizure of unknown cause | My mum getting angry with me | Dying | Feeling happy |
GM16 | 7 | F | Mother | Malayalam | Follow up after neurosurgery | (Left blank) | (Left blank) | (Left blank) |
Endo1 | 11 | F | Mother | English | Growth delay | (Left blank) | (Left blank) | (Left blank) |
Endo2 | 8 | F | Mother | English (non-native) | (Left blank) | Scared | (Left blank) | Jumping into the water |
DM1 | 10 | M | Mother | Arabic | Type 1 diabetes | Coming here and missing school | Staying away from my family for a long time | Make a new kind of pump |
DM2 | 7 | M | Father | Punjabi | Type 1 diabetes | Insulin injections | Reading/studies | Can’t eat sweet stuff like ice cream |
DM3 | 8 | F | Foster mother | English | Type 1 diabetes | Food | Mood | Making friends |
DM4 | 8 | F | Mother | English | Type 1 diabetes | Getting interrupted in school | Always having to check by readings | (Left blank) |
DM5 | 7 | F | Father | English | Type 1 diabetes | Erin (older sister) has got to eat sweets | Sweets | Eat sweets |
DM6 | 8 | F | Mother | English | Type 1 diabetes | About my friends arguing at school | One of my friends does not like to play with my other friends | Make a friendship club |
Themes | Themes & subthemes defined | Subthemes | Codes |
---|---|---|---|
1) Children’s understanding of concepts presented in P-MYMOP (i.e. ‘Problems,’ ‘Duration of problems,’ and ‘Faces scale’) | If children can name their problems, they can complete individualised questionnaires Child’s identification of his/her problems tells us that they can understand the P-MYMOP and hence provide positive mark to the content validity of our questionnaire | 1. Child named their own problem | C: (thinking…and then wrote down something on the form -observation) is that it?’ M: What do you think, what your problem would be? C: Hmmmm you can write… M: You can write it down. Come on (handed the pen to child) Observation: Child is completing questionnaire on her own. Getting help with spellings M: (helping with spelling) u i n g Example when parent named the problem for child: GM3: Mother: to do you want to fill out this? This is like a visual way for us instead of using words So, you can write up here. You can say sore toe Mother: No no no, you just write on the smiley faces. You show me, show the lady how good or how bad it is you finding learning, reading, and writing at the moment |
1. Children’s understanding of the faces scale | DM3: M: Now look at the faces below and circle the face that shows how bad that problem has been over the last few days C: Hmmmm M: So how bad it has been over the last few days. Have you thought about food lots, not a lot, or (pointing to faces) C: Hmmm what do you think? M: No this is your question C: Hmm I think this one DM5: F: now, look at the faces below and circle the face that shows how you have been feeling over the last few days.’ Observation: child selects a face | ||
1. Understanding of the duration of problem | DM2 F: How long have you had problem 1. This problem (pointing to questionnaire) C: Since a year F: 3 months to 1 year DM3:C: How long have you had problem 1 either all the time or on and off please circle (reading the duration question) C: I have had it for five years M: How long have you had problem with food? C: Five years M: Over five years C:No five years’ | ||
2) Reading and writing on P-MYMOP | This theme included observational data if the participating children were able to read and write on the P-MYMOP | 1) Who wrote the individualised items on P-MYMOP | Example of getting help with spelling: GM3: Child: how do I spell sore? Mother: You tell me how you spell sore? Child: s o r? Mother: Hmmm (affirming) and e.hmm DM5: F: You can tell daddy if you want him to write C: I want to write |
2) Who read P-MYMOP | DM5: Codes from interview of a 7 year old child from diabetes clinic: Interviewer: Could you understand the questions when you were reading them or when your dad was reading? C: Indicated no (observation) I: No? Was it confusing? C: No I just can’t read but I know what daddy said | ||
3) Circle/cross to Select a face on the paper form | Participants completed paper forms were evaluated for this subtheme. Details are given in the results section | ||
3) Perceived value of using P-MYMOP | Value of using P-MYMOP | GM15:’ Mother: yeah for sure. Yes absolutely which I guess for children often parent is the one who does talking so I guess this is an easy way to get them to be able to comment without having to may be face to face with the doctor GM3: So this questionnaire, and I really like the visuals (referring to faces scale) because that is something they really can use and often in learning you use visuals in every element of learning for kids, specially kids with developmental and learning difficulties that you rely on visual stimulus a lot and that’s really handy It’s a great scale and a great questionnaire for GP but for specialists … a specialist or a paediatricians for longer term care they might not necessarily understand that there may be even an issue and therefore a questionnaire for parent might be a better thing. As I said when we were at (hospital) with his broken arm I loved the fact they talked to him about his body (referring to his son) and as a parent often I find that very refreshing And they hate, kids hate being talked about. [Name] coz she really have had a life time of medical appointments about her. She really really hates being talked about in her presence and I often, if I can get to see the therapist by making appointment to see them (Interviewer: Before?) before to meet with them to discuss it so that I don’t have to say it in front of her GM3: Still a good scale to use, I do love … I love the use of visuals. Any part of you know teaching kids or communicating with them they work really well GM5: M: Also it is a very good idea, isn’t it? (asking child) It’s about the emotional side of how they are feeling as well as physical. I: So do you see value in that? M: oH yeah. Yeah I do a lot for sure | |
Interested in completing in future | GM14: M: I reckon, it should be done. Because like sometimes you forget what you forget stuff that you wanted to ask and if the kids can it themselves it will make it a lot easier for all of us | ||
Statements on child’s voice in consultation | DM3: M: Well it is (P-MYMOP) beneficial. We actually see someone else outside of here for these problems so for the doctors to know the problems that are going on. … I think would help M: Do you like this? Being able to give this to Dr (name) or would you rather tell Dr (name)? C: Give it to Dr (name) M: right. Give it,give something like that to her C: so she knows what I am saying C: Coz it will be difficult to explain it to her M: Yeah … C: …very difficult ‘ | ||
4) Approach to the meditation questions | Completion of medication questions on the paper form and any issues raised about the medication questions in the interview | DM1: M: (medication) with this one I believe it wasn’t much relevant to the insulin because they are all type 1(diabetes). In their case it’s all type 1 All attending the hospital are type 1 and they are taking insulin so it was a bit confusing DM2: ‘: ok this is about the medications if he is taking anything. He is taking insulin obviously but is taking anything else? F: No I: OK then just leave this out F: It’s not applicable Dm5: F: Yes unfortunately we cannot cut insulin DM6: M: Is avoiding it … It’s quite important that she takes it. …. Not important | |
5) Suggested changes to P-MYMOP | As observed by the researcher from the P-MYMOP forms, the children from the Diabetes/Endocrine and General Medicine Clinic whose parents suggested changes, did not have any presenting complaints DM1: M: yeah. If you can please give us more space to write down that we are here to see the educator, the doctor and seek guidance and speak to this and this. Aaah … couple of issues DM2: F: I have done this thing in my own masters. I have done an MBA so I have done this research program and sort of thing If you … If you make this questionnaire related, more specific towards diabetes. For example, are you … are you happy? First of all you need to tell this kind of faces, how happy you are with your diabetes … You will you will understand from kids point of view whether kid is happy with diabetes or not, one thing (observation: child pointed to a face) F: See this is a specific answer. I didn’t tell him anything. This is first question. Second question is OK the way you are taking insulin, is that insulin is helping you control your Hbgl levels. So what other help you need in terms of controlling it Endo1: M: I guess. With it says ‘problem’, it’s kind of like, I don’t know. This doesn’t really make sense. Yeah I: What would make sense? Can you suggest a different word? M: I don’t know. Any worries or concerns I guess. May be. I don’t know GM6: M: (reading the activity question to point out the place of confusion for her) Look at the faces below and circle the face that shows how hard it has been to you. I think there is something wrong with the instructions there coz I got confused How hard it has been to you. … I think has been for you, for you not to be able to do this for the last few days? | ||
6) Connecting activity with identified problems | The theme is about the completion of the activity question on the P-MYMOP, and any issues raised in the interview about the question | DM 1: M: No, he separated the problems from what he really wants to do. So we believe that this question is separated, totally separated from the second question. When he expressed his feelings here about the problems he didn’t believe that this problem would stop him from (I: doing anything) doing anything DM6: M: OK choose something you really want to do but find it hard because of your problems. I think it’s about these problems right. So what did you want to do that is hard? C: Writes down something M: Hmm that is tricky M: But that doesn’t make you super sad like your other ones? C: No |