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
1a) 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
2a) 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.
3a) how you take it, b) the taste, c) what you can do if the treatment does not work.
4a) when you take it b) how you take it c) the taste d) further explanation on medication.
5To explain how to take the medication
6a) 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
7a) 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
8a) How you take it.
9a) The taste.
10a) How you take it. b) The taste.
11a) 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.
12a) 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?
13a) How you take it is important for children b) The taste – they are not going to be so willing if it tastes horrible
14When you take it
15a) 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.
16a) How to take it b) What it tastes like c) Being able to contact someone for advice in-between appointments
17How easy it is to disguise the treatment for the child as a lot of children will not take medicines or powders by choice.
18When you take it - morning with juice
19How you take it
20a) 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.
21Takes it in her milk
22How much medication can be taken?
23a) The taste b) Had enema via ‘ACE’ – unpleasant but bearable.
24a) How you take it b) The taste c) If it can taste nicer in the juice
25The taste, I don't like sleeping at the hospital.
26When you take it.
27If it is oral the taste is important but it is also important if it doesn't work to know there are other options.
28It could taste better.
29When 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.
30How you take it.
31The taste. When to take it. The knowledge of what to do when the treatment isn't working.
32The taste, What you can do if the treatment isn't working – Increase it.
33Takes Movicol in grape or apple juice. It's not unpleasant. Doesn't mind taking it. Whisking makes it easier to mix.
34How you take it.
35Treatment 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.
36That it tastes nice and it works

From: Appendix F, Involving children in guideline development

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

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