For the vast majority of children diagnosed with a childhood liver disease, daily medication becomes a part of their life. Yet as young people grow up and become independent, many fail to take their medication correctly. Here, clinical psychologist, Dr Jemma Day and consultant hepatologist, Dr Marianne Samyn, look at why this might be and how parents can help.
Even though they are told frequently by their medical teams that it’s important, why do so many young people stop taking their medication (or not take it correctly)?
Taking medication every day is a really hard thing to do, especially when you have to do it for a long time. It is usually only people who haven’t needed to take long term daily medication that think it’s easy, most people who need to take regular meds say it is hard at times.
People of all ages make so-called ‘unhealthy’ decisions all the time – many sensible adults drink more alcohol than the recommended guidelines, drive a little over the speed limit, regularly skip their five-pieces-of-fruits-and-veg per day or take less exercise than recommended. Knowing that these decisions are more likely to make us sick isn’t enough to change our behaviour, and taking medicine can be much the same.
There are so many reasons why young people might not take their medication as prescribed. Sometimes it’s because they are busy and forget – particularly when their routine changes (such as going on holiday, starting a new college/job or moving away to University). If they don’t immediately get sick (which few would straightaway, even if damage was being done on the inside), they can wonder if they really need the medication at all.
Young people often tell us that they don’t feel any different whether they take their medication or not. This can feel confusing and lead them to question whether they really need their medication. Taking medication in order to prevent getting sick in the future, such as to prevent the loss of a transplant, is much more difficult than taking medication when you have symptoms (for example, taking paracetomol to get rid of a headache).
Sometimes, the practicalities of taking medication can get in the way – for example if the medication needs to be stored in the fridge or taken on an empty stomach. It can be hard to fit these things into a busy day, especially when wanting to stay out later than planned or go on a spontaneous trip with friends.
Young people tell us that sometimes it is the side-effects, or the perceived side-effects of medication that leads them to consider stopping their medication. The taste of the medication can be off-putting, and some people feel a little nauseous after taking certain medications. We know that high dose steroids can significantly increase appetite and body shape, which can be difficult for people of any age, much more so young people. Even when the steroid dose is then reduced (and thus not likely to cause any such side-effects), some people remain worried about taking them.
For some people, the medication can be a reminder of their condition or symptoms, or make them feel different to their friends. Humans naturally avoid things which make them feel anxious or vulnerable, and sometimes missing medication is a way of trying to manage their worries.
Is there any kind of ‘danger zone’ in terms of age when this is most likely to happen?
Anybody can struggle with taking their medications, regardless of their age. We know that there are often lots of changes going on for those hitting adolescence and young adulthood, which can make this period a particularly vulnerable time. Physical changes (puberty and growth) go alongside changes in how young people think and feel, and the nature and importance of their social worlds. We know that the human brain isn’t fully developed in its structure or its function until the mid-twenties, and this results in the behaviours adolescents are known for, such as an increase in risk-taking, feeling invincible, developing independence from parents and carers, and a reduction in abstract thinking. For young people with liver conditions, fulfilling both the demands of being an adolescent and managing illness/treatment can be very challenging. For young people to take medication daily, they need to hold quite abstract concepts in their mind. To continue taking meds even though you don’t feel unwell when you stop, when you struggle to plan, your world is not stable or predictable, and you feel invincible anyway… It’s a very hard thing to do- and it’s not surprising that young people struggle.
Although missing medication can undoubtedly be dangerous if you have a liver condition, and cause a lot of anxiety for parents/carers and young people themselves, it’s actually very normal and developmentally-appropriate.
Clearly this is a worry for parents. What can they do?
The most important thing to remember is that it is very normal, and it does not mean that your young person will find it hard forever. Most young people struggle at some point, and although it is totally understandable that parents and carers feel very worried about non-adherence, we know that telling them off and lecturing them about why medication is so important, rarely makes much difference.
Instead, take some time to manage your own emotions relating to the situation before speaking about it calmly with your child. Gently explore what is getting in the way for them – thinking about some of the potential issues mentioned above, as the support they will need will depend on what is getting in the way for them. For example, if they are choosing to miss their medication because they are worried about the impact of the medication on their appearance, no amount of reminders or setting alarms on their phone will make any difference.
Encourage your child to contact their medical team to discuss the difficulties they have been having. They will not be told off, and it might have important consequences for their treatment; If their blood results have shown a change but the team are aware that they haven’t been taking their medication as prescribed, then they are likely to discuss support options to improve adherence to the prescribed regimen instead of recommending more medication.
Are there any tips for young people themselves?
We have learned lots from the young people who come to our clinics over the years. For problems with forgetting or a change in routine, some young people have told us that setting alarms on their phones, keeping their medication in a pillbox and in an obvious location (such as by their toothbrush) can help. Although some young people and their parents are keen to push for independent medication management ASAP, we know that others prefer their parents to help out and supervise their medication for a little longer, and that’s absolutely fine, providing it works for your family. Gradually working towards independence in the run up to a significant change (such as moving out of the family home) tends to work better than a sudden shift.
We encourage young people to ask questions about their condition and discuss their treatment management with the medical teams. Having a good understanding of your condition, the results of investigations and how medications help is important (although certainly not the only important factor!). It is rarely helpful to force this information on young people; instead answer their questions openly and honestly and help them to access good quality information.
Careful planning can help in some situations – for example, preparing a small box with emergency medication in case of staying out late.
We very much recommend sharing any concerns you have with your medical team. If they can, they might make some changes to your medication regimen (for example, reducing the amount of medication you take to focus on the most important, or changing to a different kind of medication). They will also link you in with other members of the multi-disciplinary team if needed, for example the dietitians for concerns regarding weight gain and steroid medication, or the psychologist regarding the impact on mental health.
