Vildana’s story
Vildana is mother to a 15-year-old son with asthma, from Bosnia and Herzegovina. She shares her experiences as a parent of the transition process.
There cannot be a universal approach to healthcare transition as all young people are different. We have different levels of maturity when we talk about patients. Some children will be okay to be transferred at 16, while others will not be okay even by 22 or 23 years old. Every one is different and it is important that there is flexibility.
Education is so important. It should start very early. Education about the transfer to adult services and about self-responsibility and dealing with your disease should start early. At 10 years old, it is not too early to be talking about this.
Another challenge is adolescent attitude – the teenage rebellion. Psychological approaches need to be considered and support offered to help teenagers understand why they should care about taking their medication properly. We need these educational moments to include talking to patients about their own responsibility after parents’ step back.
Parents are having to manage the process of transition themselves but without any training or learning. We are having to fill the gaps of teaching our children about their condition. This is not about giving our kids a fish, it is about teaching your kids how to fish.
I tell my son that everyone has things they must manage – and this is yours. And we can say thanks to the universe that it is possible to be under control. You just need to work out how to do that and then remember to follow that plan.
We have had our challenges with my son going away as a teenager with his football team. It is a worry and a challenge to trust that he knows how to manage his condition when he is away. This is why a holistic multidisciplinary approach to helping families through transition, not just individuals, is so important.
Education is also needed among clinicians. We need guidelines that will be accepted internationally. But within the guidelines there needs to be flexibility and an individual approach to every patient.
Paediatricians should be able to say, “you should stay a year more with me”, for example if they think the individual is not yet mature enough to manage on their own. Everyone ages at a different time and everyone’s parenting style is different. All those things will have an impact on an individual and whether they are ready.
This flexibility can be defined – for example, a checklist could be used to assess if a person can manage themselves yet – or whether their disease is well-controlled. If not, they could stay longer, for example.