By Olivia Fulton, expert by experience and patient advocate
Being in charge of my own inhalers was a scary and exciting time. It meant there would be one less thing that my parents would nag me about every morning and night and as a young person it felt like the nagging was constant. (As an adult I now know that it was due to care and just wanting the best for me!)
Helping a young a person to manage their asthma independently
I recently spoke to my parents to ask them about when they decided I was ready to take more control of my asthma and how they went about doing it. My mum said she found it hard as there was no rule book to walk her through this but she felt very apprehensive because she did not want me to get unwell but at the same time knew I would need to get into the habit of managing my medication and asthma myself.
Mum decided to use school holidays as the time to start this process as she felt that we had the time to dedicate to the process and I would not be at risk of getting overwhelmed between starting a new routine while also juggling the balance of school.
Taking time to understand my asthma
Before we did anything she wanted to make sure I understood my asthma, what triggers it, the way the medication works on my airways and when I needed to take what had been prescribed. Mum again mentioned that there was no real guidance on this as this was before the internet so any information came from personal knowledge through lived experience from other family members and a leaflet from the GP.
She also didn’t want to do everything at once so broke it down to preventer and reliever as it was different things to remember.
For taking control of my reliever inhaler she initially left my inhaler and spacer out on the hall table so I would see it when putting my shoes on and leaving the house. Gradually I remembered to bring it with me more and more. Initially, whoever I was out with would have one with them so if I had not brought it and had an asthma attack I would be ok and would not be without medication.
Sticking to an inhaler routine
Remembering to take my reliever inhaler with me was always easier as it would give immediate effect when I took it.
My mum likened trying to get me to take my preventer inhaler myself without prompting to trying to get my brothers to brush their teeth; no amount of nagging seemed to work. She said she had to try various different things to try and get me to remember. The only time I did remember was when I had to take my lunchtime dose of preventer because it meant myself and a friend got out of class 5 minutes early – and that also meant I would be near the front of the lunch queue!
Slowly but surely after trying different methods I finally managed to remember to take my preventer inhaler. At first it was in the morning, and then latterly I was able to take all doses independently. Mum found putting my inhaler in places where I could not miss them helped. Even though this meant she was still having to remind me, I was becoming more independent and she did not need to verbally ask me to take it.
Even now the habits that she helped me form, I still do today. It doesn’t matter where I am – home, with family or on holiday, my inhaler gets put by the sink next to my toothbrush. My reliever inhaler is always left next to my house keys and my wallet.
Why patience and persistence are key
The above makes it all sound very straightforward but there were many many bumps in the road, arguments and rebelling on my part against what I was being told to do, but this was not out of the ordinary for children growing up.
Reflecting back I am so grateful for the effort and input of my parents to get me independent in managing my asthma as those habits developed still help me to this day. As an adult I now also appreciate the time and dedication it took especially in a time where they were not able to easily get information or support from other parents going through a similar experience.
One of the hardest aspects I found in taking control of my asthma management was making the right decisions when my asthma was not good. As much as I was desperate to be independent in many aspects of life, I found it hard to make independent choices about when to increase my medication – even though I had a personal asthma action plan on the form attached to my peak flow diary. I would never follow the plan independently; I would defer to my parents to make sure I was doing the right thing, not realising that the decisions they made were taken using the personal asthma action plan. This went on for many years and even now as an adult I will still mention to my parents if I am taking any action to help my asthma.
There is no right or wrong way when handing over the reins to a child. What worked for me will not work for everyone. The method that my parents used with me did not work for my brother. I am very routined in what I do, which is what my mum says made it a bit easier for her to get me more independent in my asthma management – but it was the opposite for my brother. She felt like she was starting from the beginning with him. However, thankfully the internet was well established by then and she could gain greater insight from what others were doing.
I asked mum what was it that made her decide to get me more independent with my asthma. She said it was a gut feeling and she just felt I was ready. Everyone matures at different times – she felt I was ready at a much earlier age than my brother. In an ideal world there would be a guidebook to take you step by step through the process.
The key points that helped myself and my parents to manage my asthma
- Making sure there was always a back-up in the initial stages of independent asthma management so if something went wrong and I forgot an inhaler then I would not suffer
- Having a written personalised asthma action plan
- Patience, it doesn’t always go right
- Knowledge of asthma, what the inhalers do on the airways
- Imagination to create ways in which I would remember to take my medication without being verbally prompted