Dr Sara Curry, clinical psychologist from Great Ormond Street Hospital in London, advises
Taking medication day in day out; up to several times a day can be very wearing. Unlike most things, a child cannot say that they want a break or a holiday from it.
For many parents, who have experienced the anxiety and confusion of diagnosis and getting used to treatment, medication is seen as a lifesaver and they worry about their child missing a dose or not taking their medication properly. This means that adherence to treatment can become an emotionally charged issue, with parents and children pulling in opposite directions.
Toddlers
If you have a toddler or young child who starts to refuse taking their medication, take a step back and think about what your child is getting out of “refusing”. Sometimes it can be about your child not liking the taste or texture of the medication or the time it is given (for example, the morning rush). If you think this is the case, talk to your nurse specialist or consultant about what changes can be made to the regime.
Sometimes refusal to take medicines can be a very powerful tool to get attention. Some children can get into a cycle of getting attention for this negative behaviour and they do not know how to turn it around. Parents in turn, spend a lot of energy trying to persuade their child to take it and they inadvertently reinforce the behaviour because all the focus is on the child’s refusal. This vicious circle can get worse and worse, with both sides getting more and more tense. Being tense isn’t conducive to taking medication. When people are tense they find it hard to swallow, which can lead to a negative association between the medicine and the feeling of not being able to swallow. If you think you might be getting into a vicious cycle of giving attention for non-compliance, then take a step back and look at your own behaviour. Are you inadvertently reinforcing the refusal? Could you switch from giving attention for not taking medication to giving attention for trying to take it?
With very young children you can do this by engaging your child in medication-taking. For example, pretend to give dolly the medicine or play by touching, tasting and measuring medications. Involve your child and turn it into something fun. Once your child tries it, give the child praise for having tried (even if they haven’t succeeded taking all of it this time) and continue to give attention for trying until your child has managed to take it for a couple of weeks.
School-age children
For school-age children you might want to introduce a reward system for taking medication. This does not have to be sweets or money. It could be a story, a game or ten extra minutes of an activity they enjoy. Children are constantly being told what to do and they have very little control over their environment or what happens to them. If you think your child’s refusal is about control, then try to displace the control they have over their medication by giving them some child-led time. If you spend ten or 15 minutes each day (before medication time is ideal) when your child chooses the game or activity and you passively follow instructions, you will notice that your child gradually shows less of a need to exert control in other areas. Ten or 15 minutes sounds like a lot of time in a busy day but coaxing a child to take their meds can take a lot of time, too.
Adolescents
For pre-adolescents and adolescents not taking medicines can be about the same attention and control issues but it can also be about not wanting to be different from peers. You can set up a reward system for older children (for example an extra half hour on their Playstation, having a friend over for tea, a trip or activity at the end of the week) but it might first be worth exploring why they struggle to take their medication. It could be that taking their medication interferes with an activity they enjoy or being able to visit friends. If so, talk to your nurse specialist or doctor about any flexibility in the timing of the medicines.
If you think they don’t want to be different from their peers, talk about ways of being discreet about their medication (for example timing and an unobtrusive container), or about how they might talk to their friends about why they take medicine. Young people often report being afraid that if they answer one question about their health, the questions will keep coming and they’ll be stuck having to talk about it. In fact, children rarely get bombarded with questions except when they evade them. Practise conversations where your child tries out a variety of responses and becomes confident about their answers. If they find a phrase that explains their condition concisely, it can save them the agony of having to explain in detail.
Practising these conversations also gives them skills for managing the way the conversation goes. For example: “I don’t really like answering all these questions. Can we talk about something else?” can be very effective.
Sometimes children’s refusal to take medication is a way of drawing attention to their worries about their health. While it is right thing to try to help them lead as normal a life as possible, there are times when their condition needs to be discussed in detail. Typically this would be when there has been a change in their health or medication, when there has been a change in their peers’ attitude to their health or limitations, or when they have reached a developmental stage and questions about the long term implications of their health begin to concern them. If you think that one of these might explain your child’s resistance to taking medications, take time to talk to him or her and help them find solutions.
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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