Involving children in guideline development

National Collaborating Centre for Women's and Children's Health (UK)

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National Collaborating Centre for Women's and Children's Health (UK). Constipation in Children and Young People: Diagnosis and Management of Idiopathic Childhood Constipation in Primary and Secondary Care. London: RCOG Press; 2010. (NICE Clinical Guidelines, No. 99.)

See 2017 Partial Update

Update information July 2017: The footnote in recommendation 4 was updated to link to the newest NICE guideline on coeliac disease. Footnotes in table 4 were corrected by NICE with manufacturer information that has changed since original publication.

Update information July 2017: The footnote in recommendation 4 was updated to link to the newest NICE guideline on coeliac disease. Footnotes in table 4 were corrected by NICE with manufacturer information that has changed since original publication.

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Constipation in Children and Young People: Diagnosis and Management of Idiopathic Childhood Constipation in Primary and Secondary Care.

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Appendix FInvolving children in guideline development

Introduction

NICE recognises the importance and benefits of involving patients and carers in guideline development and is committed to this aspect of guideline development. The involvement of children in health care policy and guideline development has been endorsed by the World Health Organisation, UNICEF and the Department of Health (Connexions). This pilot project was undertaken to inform:

The guideline recommendations for idiopathic childhood constipation
The NCC's understanding of how and when to involve children in paediatric guidelines

Method

Children's involvement in development of the childhood constipation guideline was carried out in two stages:

Stage 1

A questionnaire survey was carried out with children who have a diagnosis of idiopathic constipation (n=36). The survey aimed to:

identify diagnosis and treatment issues that are most important to the children themselves
identify where children's views differ from those of parents/carers and the health professionals involved in their care
provide information to support consensus work in areas where there is little clinical evidence.
inform the reviews and contribute to the decision tree regarding the wording of the final recommendations.

Development of the survey questions and analysis of findings was carried out by the project director, senior research fellow and GDG chair supported by GDG members. This work was supported by the Enuresis Resource and Information Centre (ERIC), the NICE editorial team and the NICE Patient and Public Involvement Programme who provided advice on the wording of patient information sheets and questionnaire items.

Questionnaires were distributed to children by clinical members of the GDG. Distribution was done mostly by hand during face to face contact, although a few were posted to recipients. Younger children were helped to read and complete the questionnaire by either their parents or by their health professional.

Stage 2

A discussion group was held during stakeholder consultation (Saturday 14^th November 2009). The aims of this were:

to explain to children how children's views have been incorporated into the guideline recommendations
to ask for their views of the guideline draft recommendations
to inform the GDG interpretation of evidence.
to ask children for their views on how implementation of the guideline could be encouraged/supported particularly amongst children and carers.

This work was carried out by the senior research fellow and GDG chair, who both have experience of focus group work and working with children. The meeting was held in Wrexham and was hosted by one of the GDG clinical members who had distributed questionnaires for phase I of the consultation work.

Children who had previously completed questionnaires were invited to attend the discussion group. For those who were unable to attend, or preferred not, to a questionnaire was offered or they were able to e-mail the senior research fellow directly with their comments.

Recommendations from the guideline were translated by NICE editors into a form appropriate for children and young people aged between 8 and 18 and children and their parents asked to comment on their clarity and state whether they felt all important issues had been covered.

The translated forms of the recommendations were presented at the meeting using PowerPoint. A variety of colours, fonts and illustrations were used to make the PowerPoint presentation as visually attractive and engaging as possible. The illustrations used were also reproduced in the questionnaires.

The discussion group consisted of:

4 children who had completed the Stage 1 questionnaire survey
5 parents of the children were also present for the first half of the meeting.

(One child and parent left mid-way through the meeting due to the child not wanting to participate in the discussion which followed the presentation)

Three children completed and returned a questionnaire (two completed the questionnaire themselves and one was completed by a parent with the child) and one child's father emailed the senior research fellow directly on the child's behalf with comments. In addition, 4 parents completed a questionnaire while they were waiting for the children who were taking part in the discussion group.

Findings

Stage 1

A narrative summary of the comments made by children in response to the questionnaire are presented below for each of the 6 questionnaire items. Tables detailing each comment in full are also included.

Q.1 What would help you to tell your doctor or nurse about your constipation?

A number of children indicated that they needed to feel at ease in the clinical setting in order to talk to the doctor or nurse about their constipation. This included approachable, friendly, empathetic staff that could be understood by the patient and parents.
Several children mentioned that the subject is difficult and embarrassing to speak to doctors about.
Diagrams and pictures was another popular answer.

Q.2 What is important to you when taking your treatment? (when you take it, how you take it, the taste, what you can do if the treatment does not work, anything else)

Responses to this question tended to follow the examples given in the question, and thus were not as helpful as responses to a more open-ended question would have been.

The most common answer was the importance of how to take the medication and the taste (some mentioned the need to disguise the horrible taste; others gave examples of how they did this e.g. mixing it with juice).
A number felt the need to know when to take the medication and what to do if the treatment did not work (a few mentioned the need for some form of back up).
Several respondents mentioned the importance of further explanation regarding medication.

Q.3 Do you have any other ways of making your constipation better?

A number of children did not know of any other ways to make their constipation better.
Several mentioned soothing the tummy either by putting a hot water bottle on it or rubbing it. Several mentioned drinking plenty of fluids or varying their diet.
The rest of the answers were varied.

Q.4 Have you ever tried to find out more information about your constipation problems? What have you tried? What was useful? If no, would you like more information? What would help you?

The most frequently mentioned source of information was the internet which was reported as useful.
Also useful were health care professionals, leaflets, DVDs/CDs and talking to other parents.
One third of respondents said they would like more information.

Q.5 How would things be different if you did not have the constipation problems?

Children:

Could have more fun
Be able to socialise more
Not be bullied at school
Could be at school more
No pain/tummy ache

Parents/carers:

Life would be easier/less inconvenience
Less stress/anxiety
Family life would be better
Fewer restrictions on trips out
Child would be more confident
Child would not be bullied at school

Q.6 Tell us up to 5 things you would like us to tell doctors and nurses who are looking after children and young people with constipation problems.

It is embarrassing/difficult for children and parents to talk about
Need caring, supportive staff. Friendly and approachable, able to communicate well with parents and children.
Need for information about medications, alternative treatments inc. diet, about constipation itself.
Need for reassurance

How the findings have informed guideline development

Children's responses were used to inform GDG discussions and, where appropriate, this is recorded in the interpretations of evidence. Where children's comments seemed to contradict the evidence or the GDG's opinion this was noted throughout the guideline and taken into consideration by the GDG when discussing the evidence and deciding on recommendations. Where children's comments supported the evidence and/or GDG opinion this was also recorded in the interpretation of evidence.

Tables of children's/parents responses

Note: All names used in responses have been altered to ensure anonymity.

Q.1 What would help you to tell your doctor or nurse about your constipation?

Respondent No.	Responses
1	A DVD explaining the problems and treatments.
2	Write them a letter.
3	a) To make it more open e.g. school nurses and teachers talking about the subject. b) No embarrassment around the subject.
4	a) Diagrams b) Books c) Pictures d) CDs
5	Talking and diagrams.
6	My pain passport means I don't have to talk to people.
7	That it is where your bowels tighten up and it is hard to go to the toilet.
8	That it sometimes hurts when I poo and my tummy is bunged up.
9	a) Diagrams b) CDs
10	Is there any other medication that he could take.
11	Pictures to point at instead.
12	12. a) Friendly, relaxed manner. b) Talking in layman's terms and not ‘medic’ speak. c) Empathy and understanding.
13	Nice easy to talk to doctors and nurses who you can explain things to frankly.
14	Liam has a problem with pooing but he only has sloppy poos and never hard stools.
15	Maybe pictures, drawings etc.
16	16. a) Approachable staff, b) Maybe a questionnaire before seeing the doctor (sent out with appointments, filled in at time by child/parent, may then include things that are embarrassed to say or forget to say.
17	If the subject was easier to talk about or there were drop-in clinics for incontinence matters available to parents or older children.
18	-
19	-
20	-
21	-
22	Only seen by Dr M x2 per year – would like more frequent access to advice from approachable professionals
23	Feel at ease in clinical setting
24	Nothing
25	Picture chart
26	Telling them I squat, telling them who is bullying me
27	It would help if Liam didn't feel uncomfortable talking about it because he gets upset
28	Charts, a constipation diary.
29	A tape recorder at home to make comments on. Likes the poo chart to explain what kind of poo he is doing.
30	To know what they are talking about and if I know more about the bowel problem.
31	It helps to have the Bristol Stool Form Scale. I find this is an easy way to describe the poo problems.
32	If they were kind and they were female.
33	Friendly staff.
34	To see a doctor or nurse at a time when not playing or watching TV. Appointments at weekend or in hospital.
35	May be a leaflet given to parents in the information given by Health Visitor or even in the information given at birth. The leaflet, to describe a few symptoms and to encourage you as a parent to talk about any concerns or views regarding any poo problems. You tend to keep it quiet or think you are failing as a parent with potty training and if it is your first child what is normal?
36	It would help if the doctors were nice and friendly.

Q.2 What is important to you when taking your treatment? (when you take it, how you take it, the taste, what you can do if the treatment does not work, anything else)

Respondent No.	Responses
1	a) when you take it b) how you take it c) the taste d) what you can do if the treatment does not work e) side effects
2	a) when you take it, b) how you take it, c) the taste – would prefer it if it tastes better, d) what you can do if the treatment does not work – would prefer back-up information such as leaflets etc., e) Written format of the scheduling of treatment i.e. how often before medication works etc.
3	a) how you take it, b) the taste, c) what you can do if the treatment does not work.
4	a) when you take it b) how you take it c) the taste d) further explanation on medication.
5	To explain how to take the medication
6	a) It does not taste nice! b) Putting the medicine in other things like ice lollies, c)It doesn't matter what time of day but because it sometimes gives me bellyache I have it in the morning
7	a) I take it before I go to bed or after my dinner b) I take it with orange juice and water c) It tastes like lemon and lime d) Go to the nurse and ask them what else to have e) No
8	a) How you take it.
9	a) The taste.
10	a) How you take it. b) The taste.
11	a) How you take it. b) The taste. c) It is important that it doesn't cause me more pain and that it is easy to take.
12	a) How you take it b) The taste c) Side-effects – does it cause wind/stomach ache d) What it is i.e. is it a natural product or a drug?
13	a) How you take it is important for children b) The taste – they are not going to be so willing if it tastes horrible
14	When you take it
15	a) When you take it b) How you take it c) The taste d) What you can do if your treatment doesn't work e) Important to take regularly and in a way which is easy/pleasant for child to take. No taste/for easy mixing/dilution works great (or fruit flavours). Also access to info about treatment alternatives.
16	a) How to take it b) What it tastes like c) Being able to contact someone for advice in-between appointments
17	How easy it is to disguise the treatment for the child as a lot of children will not take medicines or powders by choice.
18	When you take it - morning with juice
19	How you take it
20	a) No problems with when to take it, how to take it or the taste b) Have back-ups: Increase medication or ring the doctor's secretary and the secretary leaves him a message.
21	Takes it in her milk
22	How much medication can be taken?
23	a) The taste b) Had enema via ‘ACE’ – unpleasant but bearable.
24	a) How you take it b) The taste c) If it can taste nicer in the juice
25	The taste, I don't like sleeping at the hospital.
26	When you take it.
27	If it is oral the taste is important but it is also important if it doesn't work to know there are other options.
28	It could taste better.
29	When you take it - like a routine. Very difficult to manage when the medication has to be × minutes before food. How you take it – Jamie is managing well with senna tablets. Taste – The Movicol means he needs a flavoured drink because of the taste. What to do if not working – it is a worry when the stomach pain is very bad. Feel unsure who to see i.e. GP, A&E or wait for next out-patients appointment.
30	How you take it.
31	The taste. When to take it. The knowledge of what to do when the treatment isn't working.
32	The taste, What you can do if the treatment isn't working – Increase it.
33	Takes Movicol in grape or apple juice. It's not unpleasant. Doesn't mind taking it. Whisking makes it easier to mix.
34	How you take it.
35	Treatment to be part of a routine for you as a parent and for the child. Treatment to be given in private (kid's bedroom) and in a relaxed atmosphere- music, TV to distract the child. The Movicol treatment to be given regular times of each day and broken down to what sort of the lifestyle of the child-No real taste as a drop of dilute juice hides any taste present. a) e.g. Movicol by itself-don't feel like you have done something wrong, confirm to your child everyone is different, talk to your consultant, GP and use the support network of the community nurses-ask any questions you may have-doesn't matter how trivial they may seem .b) e.g. suppositories- Don't panic give it time and try not to show any anxiety to the child, give them praise for doing the treatment but monitor it and do continue the treatment given. Don't give up, it's a long road but together you can do it. Basically to sum up the answers to the questions in section 2, just try to fit any treatment given into your family's every day life and don't be ashamed of asking for help. Speak to your child, partner, doctors etc and most of all do not feel guilty, it is nothing either the child or parent could have prevented. Keep confidence and show this to the child and confirm one day it will be alright, it just takes time but with team work you can all get through.
36	That it tastes nice and it works

Q.3 Do you have any other ways of making your constipation better?

Respondent No.	Responses
1	No
2	a) Hot water bottle on abdomen. b) Essential oil on “belly” – cover in cling film and apply heat.
3	No
4	a) Hot water bottle on tummy, b) Homeopathic medication (treatment sympofigs).
5	Hot water bottle on your tummy.
6	Don't know.
7	Go to nurse and ask.
8	Using medicine and moist tissues and try to poo regularly.
9	Rubbing your tummy.
10	Hope for it to go away.
11	a) Sometimes having a bath helps. b) Drinking more water.
12	a) Soft fruit e.g. pear, melon, kiwi help b) Avoiding lots of rice and oats c) Probiotic drink – may be placebo! d) When he was a baby – his condition improved when he started crawling and walking.
13	Not sure!
14	We will try everything we can in every way to help Liam with his pooing problem
15	a) Visit your doctor, b) Drink plenty (apple juice and pineapple juice worked well), c) Being active as much as possible.
16	A reward system (a sticker chart).
17	Making a child feel confident enough and not ashamed or embarrassed to tell anyone if they need the toilet immediately or if they have had an accident.
18	Not answered.
19	No
20	No
21	a) Observe diet. b) Plenty of fluids.
22	None
23	No
24	No
25	Drinking lots of orange juice.
26	Run for it .
27	No
28	Not really.
29	Have a bleeper going off every 5 hours to tell me to try and do a poo.
30	Going on the trampoline.
31	Maybe a change of diet.
32	Drinking more fluids and eating more fruit and veg.
33	Spending time sitting on the toilet with a game or book.
34	Spends 5 minutes a day looking at the internet researching the problem.
35	Keep to a healthy diet and exercise, try not to stress or get uptight about what is happening .
36	Going to hospital and eating enough healthy food.

Q.4 Have you ever tried to find out more information about your constipation problems? What have you tried? What was useful? If no, would you like more information? What would help you?

Respondent No.	Responses
1	Yes – tried HV and SP. HV was useful. HV gave family information on problems, causes and treatments verbally and with leaflets.
2	Yes – tried the internet. Google and other search engines were useful. Would like more information in the form of pamphlets and CDs.
3	Internet, read leaflets, DVDs and parents' forums.
4	Television programmes and books.
5	Visiting the SP, researching information – magazines etc, CD.
6	Not before but when I met my nurse my book with pictures of poo and my sticker book helped a lot.
7	-
8	Going to the hospital and asking parents.
9	No
10	No, would like more information.
11	a) Sitting on the toilet for a long time. b) Long baths. c) Drinking more.
12	No. Whilst I understand that diet does not cause this condition, I would like info on foods to avoid during an episode to help with tummy ache / pain and foods that may help to prevent an episode arising.
13	Not found out more information.
14	Some information has really helped off the doctor and his advice has really helped us.
15	Tried using the internet – very useful – how we found out about Movicol (which has been brilliant!)
16	Internet was helpful and talking to other mothers whose children have gone through the same thing.
17	Have read books and researched the internet. They have helped but not been entirely accurate to how you have to deal with it day to day. There should be papers available that write about real experiences.
18	No
19	No, I would like more information.
20	Tried the internet, sites and articles were useful.
21	Tried the internet which was useful.
22	Internet / colleagues in NHS.
23	Tried the internet, which was helpful.
24	a) Yes have tried finding out more information, b) No, would not like more information.
25	We saw a “behaviour therapist” who did some “sneaky poo” work – didn't work. Looked up remedies on the internet.
26	Cartoon DVD.
27	Yes via internet but it has not been explanatory enough. Yes I would like more information.
28	Yes. Internet sites and books.
29	Would you like more information – no. What would help you – my consultant.
30	Knowing what's best for me and if it will go if I carry on taking [my medication?] and a little booklet about bowel problems.
31	Just read leaflets that have been given out. Would be helpful to know any specific websites that could provide information.
32	We looked on the internet. The information.
33	Have you ever tried to find out more information about your pooing problems? No.
34	Looked on the internet, can't remember which sites.
35	We have looked in and read up a little information in books but the most useful thing was speaking to the community nurse and realising, you are not alone. We think more information on this type of problem needs to be out there so that parents are aware it exist and then are able to seek medical help sooner before it stresses the whole family totally out.
36	Mummy has looked on computer and it tells you the same as the doctor.

Q.5 How would things be different if you did not have the constipation problems?

Respondent No.	Responses
1	a) Parents would feel more relaxed with him b) Parents would not worry so much about him.
2	a) You would not be stressed. b) No pain on defecation / sore abdomen.
3	At school more – patient has been off school due to sickness caused by constipation.
4	a) Play more b) Not have sore tummy!
5	Play outside when it is sunny.
6	a) Would be better because I could be at school more. b) I would not have to have enemas.
7	Won't have to go to toilet as much and won't be as hard.
8	I would be more confident getting changed in public and friends smelling it.
9	a) Play more b) Tummy not so sore.
10	A lot different, I wouldn't get picked on at school.
11	a) No Pain. b) Feel better. c) Feel happy. d) Not miss as much school.
12	No difference currently – not severe enough to cause any real problems.
13	Things would be lovely as it's quite inconvenient at times with a child, you have to try and second guess when they want to go to the toilet.
14	It would make life a lot easier if it's really hard work when a child has this problem.
15	There is no problem at the moment (because of Movicol) but it used to be very different (cancelled outings, carrying spare clothing etc.).
16	Just a little less hassle getting repeat prescriptions (being able to call and pick up medicine when you've run out would be so much easier).
17	Outside school – social life, would be able to go out without taking nappies and pull ups, would be more confident wouldn't be picked on in school.
18	-
19	He would be out of nappies by now.
20	a) Childs confidence would go up socially and school toilets dislikes access, b) Goes to bed later trying to poo, c) Family life affected.
21	Things have improved – ok re family life.
22	Improve child's social, family and school life (bullied in latter).
23	a) No social problems. b) Confidence was affected during initial problem – improved when treatment succeeded.
24	Nice having fun instead of having a wash.
25	Would have to go to hospital. Wouldn't get tummy ache. Wouldn't poo in knickers.
26	I would be able to go to the toilet. Be a normal kid. Would not poo in my pants at school..
27	I would be able to take Liam to school and he wouldn't have any other problems with children taking the mickey.
28	I would feel better in myself.
29	People wouldn't be mean to me when I have [an] accident. I wouldn't get tummy ache.
30	I would be able to go round people's houses and not worry that I could have an accident. I would be able to wear boxer shorts.
31	Would be toilet trained and not be restricted to where and how long to go out for.
32	They wouldn't.
33	Not a problem now. Doesn't stop anything. No sleepovers yet though.
34	It would be better. Less people making fun of me or even none. Wouldn't need to go to the toilet at certain times.
35	Life would be easier and calmer and a lot happier for my son. It has been a long road for someone so young to have to take and he would be able to go to friends' houses more and even have sleepovers. Not having to worry about the delay treatment and generally just easier all around. We are also half way through this but achievement so far has been great and one day we will be able to look back and say-we did this together and son you got through it.
36	I would be happy. I would not have to wear a nappy in bed.

Q.6 Tell us up to 5 things you would like us to tell doctors and nurses who are looking after children and young people with constipation problems

Respondent No.	Responses
1	a) Health professionals need to be more updated. b) Waited previously in another health board for a year before your appointment (standardised care). c) Parents feel that they need more information on the subject.
2	a) What the nurse/doctor can do to help you. b) Which medicines are best. c) Alternative treatments.
3	a) The service has improved in the last 5 years. b) There is less embarrassment due to it being more in the open now.
4	Wish it wasn't so embarrassing.
5	a) CD given to parents with information on it b) Getting phone numbers and contact numbers for other treatments.
6	a) Medicine makes it taste better especially in lollies. b) Stickers and books help going to the toilet because you can have a sticker when you do a poo because it makes it fun. c) People should listen to me. d) Explain things in an easy way and make me important when you talk to me.
7	No
8	Thank you for helping me and others.
9	-
10	a) Why does this problem start? b) How can it be resolved? c) Will it ever get better? d) Is there any other way to fix it?, e) Will it ever stop?
11	It is good that my mum can phone a nurse for help when I am in pain with my problem.
12	a) It can effect all aspects of a child's life (disrupts sleep, puts them off food, confidence using toilet outside of home). b) Parents feel responsible for the problem yet helpless to do anything about it. c) Tummy ache can be distressing / stressful for the child and parent. d) It is not something that parents like to talk about. e) Info on ‘type’ of poos was useful when first diagnosed.
13	Try and make going to the toilet fun! Otherwise it becomes very hard work when they don't want to go.
14	a) Having a pooing problem does not mean your child is lazy, dirty. b) It's not their fault just try to help your child in every way you can c) Don't call names or shout at them because it only makes things worse, d) If you keep on saying you are going to sit on the toilet until you do it it won't work either it will only make your child's brain shut off from your voice e) Please help your son and keeps praying him when he does try and use the toilet cause he will every time I go on the toilet mum/dad will say I'm a good girl/boy it does help!
15	a) Advice on diet and drinks, b) Activity c) All our visits have been informative, friendly, helpful. Help given by lovely doctor, nurses and staff.
16	a) Patience b) Friendly and approachable staff always make things easier.
17	17. a) The parents could be very embarrassed about it and be finding the whole thing very stressful so be supportive b) The child is getting bullied so will be taking the subject very seriously and may not want to talk about it.
18	-
19	-
20	a) Talk to other parents with children similar problems. b) Nurses very supportive.
21	Cannot think of anything.
22	a) It is not just behaviour problems b) Child has confidence to say if has pain c) Parental support d) Parental groups e) Made to feel guilty by pharmacist re cost of medication methylcellulose (liquid).
23	Had idiopathic constipation – had to constantly tell problems to doctors and try different medications before diagnosis and appropriate treatment.
24	Nothing. Talking to children. Picture.
25	To play whilst looking at me.
26	Nothing. Doctors don't talk to me much.
27	Do what you can to sort out the problems because it's upsetting because it would give him better quality of life without [the] problems he is currently facing.
28	To make it more easiest to talk about. To explain the treatments better. To be understanding and gentle.
29	Child: I don't want to do a poo in my pants. How do I stop it happening? How many senna tablets should I have? How can I make my poo soft? Can you ask the sticker company to carry on making the stickers (for the sticker reward chart) Parents: Reassurance it will stop. Advice as to emergency care. I have taken him to A&E when rolling around on the floor in pain and felt they didn't understand.
30	It's embarrassing changing my pants. That people can smell the poo. Not being able to wear boxer shorts. Being able to understand words about my problem. Why does it take so long to get to normal and wishing that I could be like a normal boy not pooing in my pants.
31	–
32	–
33	Following “the plan”. Give it a go. “Poo” models.
34	Not to interrupt TV programmes, See children at weekends. Simple wording. Make it as interesting as possible.
35	35. a) Depending on the age of the child, stress can play a big part in this type of problem. Speak to them as a child basis and in a friendly manner. b) Generally inform parents support is there if they should choose it or not, but do confirm that other parents and children have found this most useful in the process of achieving results. c) Keep the confidence and rapport going with the child with praise and it they are doing well tell them it makes happier and they are in control feeling. A real benefit to the child is getting better. d) Do make it clear, as it has been to ourselves and our son, it is long process and not a quick fix there just isn't one. One in a daily routine how normal life can resume and it doesn't feel such a big thing and this is in itself a great benefit and helps the child and so has an impact on their happiness and that of the whole family. e) They (doctors, nurses) do a great job not just medically but emotionally to all the children and families with this type of problem and what a difference you all make-Thank you.
36	36. 1) be friendly, 2) Understanding, 3) Help them with going to the toilet, 4) Tell them it wont last forever, 5) Don't worry accidents happen

Stage 2

The tables include the responses made by the 3 children who completed the Stage 2 questionnaire and a summary of responses made during the discussion group. The one email received by the senior research fellow contained comments about taking laxative medicine and these were also reported by children in the discussion group when looking at recommendation 6.

1. A doctor or nurse will ask you questions about you and your poos. This is so they can decide if you have constipation and how to help you feel better. It will also help them decide if they need to do some tests

Respondent No.	Responses
1	Yes [clear]
2	Good
3	Yes that is good but make sure the doctors/nurses make it sound so it's not a big issue.
Notes from discussion group	Yes, clear. Do something fun before and after. Not too serious, make it fun. Ask questions in a way that make it easy to answer, give options like yes/no. “It's much better now, we have the same doctor every time. You get to know them and you can trust them more”. If you see the same doctor it makes it easier to talk.

2. A doctor will look at your body, including your bottom, and feel your tummy. This is so they can decide if you have constipation and how to help you feel better. It will also help them decide if they need to do some tests

Respondent No.	Responses
1	Yes [clear] Doesn't like the idea of this. However, when first visiting the doctor about constipation had no problem with being examined in the way described.
2	Yes [clear] Wear gloves. Tests are fine as long as they don't hurt too much.
3	Yes. Again, speak calmly.
Notes from discussion group	Yes, clear. Do it softly. Explain what you are doing. Warm hands are important.

3. Sometimes the doctor may need to put their finger in your bottom to check that there is nothing wrong. This should only be done once, and if you say so. A special doctor who knows about bottoms will do this and tell you what they are doing. The person who came with you will be in the room when this happens

Respondent No.	Responses
1	Yes - clear
2	I would not want anyone to be in the room.
3	Normally children don't want their mum, dad or guardian with them in the room, so ask the child if he or she wants their mum, dad or guardian in the room.
Notes from discussion group	Yes, clear. Add “if you would like them to be”. Have a doctor the same gender as the child. A doctor the same gender can empathise with you better.

4. Doctors can usually tell if you have constipation without doing any tests. But a doctor might take pictures of your tummy (called X-rays and ultrasound scans) to see how well your medicine (if you need any) is working

Respondent No.	Responses
1	Clear
2	Yes. As long as they explain what they are doing.
3	Good
Notes from discussion group	Yes, clear. Talk it through and find out what other people think.

5. The doctor or nurse might need to ask you questions to find out if you have lots of poo stuck in your tummy which may be making some poo leak out of your bottom

Respondent No.	Responses
1	Yes [clear]
2	Tell them that if you're sitting down for a long time or if you talk about poo some comes out without you realising.
3	That's good. Don't keep asking the child questions the child might get nervous.
Notes from discussion group	Yes, clear. Especially difficult at school. It is good to have a school nurse or someone at school who knows about it and who you can talk to about it. It makes you feel nervous in case other children find out. Teach teachers about constipation and include it in the school curriculum so everyone learns about it. You can have a medical card that you hold up if you need to go to the toilet so the teacher knows you are allowed to go out during the lesson. However, it is not good to be singled out at school. This makes sleepovers and staying away from home eg. on brownie or cub-scout camp, very difficult or impossible. (Field note: The children talked about this a lot and very animatedly, it seemed very important to them.)

6. There are different types of medicine a doctor can give you if you have lots of poo stuck in your tummy which may be making some poo leak out of your bottom. You can take the medicines in different ways to help them taste nicer, for example mixed in yogurt, ice-cream or juice

Respondent No.	Responses
1	Clear
2	Yes. That's a good idea if they don't know it's in some food because then they will not hesitate from eating it.
3	Yes, that's really good
Notes from discussion group	Yes, clear. You need things to help you remember to take your medicine, it is easy to forget. You need to find a good time eg. tea-time. It is good to have something nice to eat afterwards to take the taste of the medicine away. Good to mix medicine with orange squash. You need to mix it up really well.

7. Quite often while you are taking medicines the nurse or doctor will ask you about your poos and how you feel. This is so they can find out if your medicine, and the amount you take, is right for you. The amount you take may need to change until you can do a poo every day without it hurting

Respondent No.	Responses
1	Clear
2	Yes. That's good because the medicine could work against them if they take the wrong amount.
3	Again don't ask too many questions.
Notes from discussion group	Yes, clear. Medicine gives me tummy ache straight away afterwards. My antibiotics fought with my medicine and gave me a stomach ache.

8. There are different types of medicine you might need to take after we have cleared out the old poo in your tummy. This is to encourage your body to poo every day. You can take the medicines in different ways to help them taste nicer, for example mixed in yogurt, ice-cream or juice

Respondent No.	Responses
1	Clear
2	Yes. That's good because it washes the taste out and it's good for younger children.
3	Good
Notes from discussion group	Yes, clear. No additional comments made.

9. Sometimes medicines don't work and you might need to see a special doctor if the problem is not getting better. Sometimes an operation might help. This doctor can help you and your family decide if an operation would help you

Respondent No.	Responses
1	Clear
2	Yes. That's good because it takes some pressure off them.
3	Good
Notes from discussion group	Yes, clear. (Field note: All children know what an operation was but were not keen to discuss this recommendation).

10. What you eat is important. Changing what you eat can help you to poo. Sometimes your doctor or nurse might say you need to change what you eat, but you should always have some medicine too. This is to help clear out the old poo and to make your poos softer

Respondent No.	Responses
1	Clear
2	Only if the person you're asking is okay with it..
3	That's good
Notes from discussion group	Yes, clear. No additional comments made.

11. Doing some exercise every day is good for you. It can help you to poo. Exercise could be walking to school, going to the park, playing football, swimming, or riding a bike or other physical activity that you enjoy

Respondent No.	Responses
1	Yes [clear]
2	That's good because children usually like exercising.
3	Make the kind of exercise that you want the child to do sound exciting.
Notes from discussion group	Yes, clear. No additional comments made.

12. You and your family can do things to help you feel better. It might help to keep a “poo diary” to show when you go to the toilet. It is important that you drink at least 6 drinks a day. Eating healthy foods can make your poo soft and can help you to poo, but you should always take your medicine too if the doctor or nurse has given you some. There is a lot to remember so it is good for a doctor or nurse to give you leaflets and information about how your body works and what food to eat

Respondent No.	Responses
1	Yes [clear]
2	Not a good idea to give them a diary because if a friend comes round all they will think about is making sure the friend doesn't find it.
3	Good but explain it clearly.
Notes from discussion group	Yes, clear. I had a diary but I forget to fill it in. It is good not to just talk about it but while you are talking to make it fun so it is not boring.

13. Constipation can sometimes take a long time to get better. The doctors and nurses looking after you may call you to see how you feel. You and your family can also ask them questions about your treatment. It helps to find out information why it has happened and how you can feel better. There is information on the web and in leaflets. Your doctor or nurse can tell you where to find it

Respondent No.	Responses
1	Agrees
2	That's good because they see that it's not impossible to solve the problem.
3	Good
Notes from discussion group	Yes, clear. Computer games would be good so you learn about constipation and how to make it better while playing a game.

14. If you do not get better within 3 months your doctor should send you to another doctor. This doctor will have special experience looking after children with constipation

Respondent No.	Responses
1	Not necessarily to a doctor. Currently having treatment long-term with a health visitor.
2	That's good as long as they explain to whoever what's happening.
3	Good but I'd say 2 months because the child would really, really want to get it sorted.
Notes from discussion group	Yes, clear. No additional comments made.

The questionnaire responses received from the 4 parents who completed the forms whilst waiting for the children in the discussion group showed that they found the recommendations clear and that there were no important issues missing.

Summary

As a result of the consultation with children on the guideline recommendations 5 main issues were identified:

The importance of health care staff communicating in a friendly, relaxed manner and of the child being able to building up trust with a health care professional. This is especially important before any examinations or tests are performed. Continuity of caregiver helps achieve this.
The important role of the school nurse (or other person at school responsible for children's health and wellbeing)
That some children may not want a family member present when having an examination and that this should be ascertained prior to one being performed.
Finding a way of taking medicine that suits the child is important, both in terms of how it tastes and the time of day it is taken.
The effect of overflow soiling is a very important and difficult issue for children. The way it limits their social life is of concern to them.

These main concerns were reported back to the GDG along with other stakeholder comments in order for the GDG to take the children's comments into consideration when reviewing the guideline recommendations.

No part of this publication may be reproduced, stored or transmitted in any form or by any means, without the prior written permission of the publisher or, in the case of reprographic reproduction, in accordance with the terms of licences issued by the Copyright Licensing Agency in the UK [www.cla.co.uk]. Enquiries concerning reproduction outside the terms stated here should be sent to the publisher at the UK address printed on this page.

The use of registered names, trademarks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant laws and regulations and therefore for general use.

Bookshelf ID: NBK65353

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National Collaborating Centre for Women's and Children's Health (UK). Constipation in Children and Young People: Diagnosis and Management of Idiopathic Childhood Constipation in Primary and Secondary Care. London: RCOG Press; 2010. (NICE Clinical Guidelines, No. 99.) Appendix F, Involving children in guideline development.
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Introduction
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Findings
How the findings have informed guideline development
Tables of children's/parents responses
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Constipation in Children and Young People: Diagnosis and Management of Idiopathic Childhood Constipation in Primary and Secondary Care.

Appendix FInvolving children in guideline development

Introduction

Method

Stage 1

Stage 2

Findings

Stage 1

How the findings have informed guideline development

Tables of children's/parents responses

Q.1 What would help you to tell your doctor or nurse about your constipation?

Q.2 What is important to you when taking your treatment? (when you take it, how you take it, the taste, what you can do if the treatment does not work, anything else)

Q.3 Do you have any other ways of making your constipation better?

Q.4 Have you ever tried to find out more information about your constipation problems? What have you tried? What was useful? If no, would you like more information? What would help you?

Q.5 How would things be different if you did not have the constipation problems?

Q.6 Tell us up to 5 things you would like us to tell doctors and nurses who are looking after children and young people with constipation problems

Stage 2

1. A doctor or nurse will ask you questions about you and your poos. This is so they can decide if you have constipation and how to help you feel better. It will also help them decide if they need to do some tests

2. A doctor will look at your body, including your bottom, and feel your tummy. This is so they can decide if you have constipation and how to help you feel better. It will also help them decide if they need to do some tests

4. Doctors can usually tell if you have constipation without doing any tests. But a doctor might take pictures of your tummy (called X-rays and ultrasound scans) to see how well your medicine (if you need any) is working

5. The doctor or nurse might need to ask you questions to find out if you have lots of poo stuck in your tummy which may be making some poo leak out of your bottom

6. There are different types of medicine a doctor can give you if you have lots of poo stuck in your tummy which may be making some poo leak out of your bottom. You can take the medicines in different ways to help them taste nicer, for example mixed in yogurt, ice-cream or juice

7. Quite often while you are taking medicines the nurse or doctor will ask you about your poos and how you feel. This is so they can find out if your medicine, and the amount you take, is right for you. The amount you take may need to change until you can do a poo every day without it hurting

8. There are different types of medicine you might need to take after we have cleared out the old poo in your tummy. This is to encourage your body to poo every day. You can take the medicines in different ways to help them taste nicer, for example mixed in yogurt, ice-cream or juice

9. Sometimes medicines don't work and you might need to see a special doctor if the problem is not getting better. Sometimes an operation might help. This doctor can help you and your family decide if an operation would help you

10. What you eat is important. Changing what you eat can help you to poo. Sometimes your doctor or nurse might say you need to change what you eat, but you should always have some medicine too. This is to help clear out the old poo and to make your poos softer

11. Doing some exercise every day is good for you. It can help you to poo. Exercise could be walking to school, going to the park, playing football, swimming, or riding a bike or other physical activity that you enjoy

14. If you do not get better within 3 months your doctor should send you to another doctor. This doctor will have special experience looking after children with constipation

Summary

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