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Why we at ISICO “talk in front of the children”: the importance of patient participation

Although “talking in front of the children” is a deliberate “policy choice” on the part of our organisation, we are sometimes criticised for it in quality assessment questionnaires. Some parents, for various reasons, like to have a separate consultation with us, either before or after seeing the patient, but as doctors and therapists, this request always makes us uncomfortable. Let us explain why.

Scoliosis treatment, whether we are talking about boring exercises, a bulky brace, or even a delicate and risky surgical operation, is always invasive to some degree. Therefore it is crucial to ensure we have the patient’s conscious and willing participation. After all, exercises must be done actively and carefully, a brace must be worn, and kept tightly fastened, for many hours at a time, sometimes even round the clock, and the surgical option is invasive and painful and also has permanent consequences.

How many of us would be willing even to consider undertaking an invasive treatment without first understanding why we need it and what the implications are if we do (or don’t) go ahead with it, and above all without being sufficiently motivated? What’s more, with scoliosis, there is also another consideration.

Whenever scoliosis occurs, the worst stage is always during adolescence. This is the period in our life when our personality is formed and when, as individuals, we distinguish ourselves from our parents, who remain key figures in our lives but from whom, to a greater or lesser degree, we need to break away.

It is when the first parent-child conflicts arise, usually with the parent of the same sex, and sometimes with both. It is the moment we really discover our own body and the other sex, a period more or less marked by hormonal impulses.

Youngsters of this age will usually be very resistant to anything concerning them that is done or decided without their consent or involvement: in this particular case, we are talking about an aspect of their health, about their body (with which they may already have a tricky relationship, and what more personal and private aspect of life can there be than our body?), and about a treatment that always difficult and invasive to some degree.  

A further element in all this is the therapeutic alliance that is formed between the doctor and the patient, often with the mediation of parents, but never without involving the patient. If a doctor struggles to talk to the patient directly, perhaps looking the parents in the eyes and only covertly glancing at the patient, pretending to address the adults present, but really directing the conversation at an adolescent who is pretending not to hear, then the whole patient-doctor relationship, the crucial basis of any therapeutic alliance, will fail. And if this alliance cannot be formed, then nothing can be achieved.

In establishing the therapeutic alliance, it is necessary to set out the sacrifices involved, perhaps trying to sweeten the pill a little to reach the required agreement. And this agreement must be between two people: the doctor and the patient.

I, too, am a parent, and I well understand the importance we parents attach to our children’s wellbeing.
I would love to spare them life’s difficulties, but I know that the key thing, instead, is to prepare them to face them.

I know that the main thing is to ensure they find the right help so that they can face difficulties head-on rather than just endure them. Because what matters in life, even more than the result, is how we deal with things along the way: we all know that you can’t win all of the time, but if you give up before you even start, you will never win at all. Illness, especially one that occurs early on, when a young person is still growing, is undoubtedly a tough test, but, despite themselves, youngsters can find it becomes a formidable tool allowing them to grow with a balanced mindset, able to recognise the importance of external help and to find, deep inside themselves, the resources they need to cope with the treatment they need.

We, parents, are often the first to underestimate just how strong our children can be. We try to protect them, thinking we’re helping them, when our job is not to stand in for them but rather to make them independent, able to take flight by themselves and face any difficulties they may encounter. We need to be willing to let our children and teens amaze us, which means we must stop continually thinking that they are too small to understand (the Little Prince said the same thing!).

Secrets, above all, are to be avoided in this setting, and the patient will always interpret any private meetings between the doctor and the parents as “secrets” being discussed behind their backs.

And what about younger children? In scoliosis treatment, as in other settings, today’s children are tomorrow’s adolescents, and building a relationship with an adolescent should start in childhood. And we can assure you that children are just as attentive as teenagers are, even though their tranquillity and peace of mind will depend on their parents achieving and conveying the same.
Sometimes it is the children who would instead escape from the situation and leave their parents to gather all the information about the treatment they face. Still, such children tend to be already fearful, anxious and distressed, which makes it even more important to reassure them and involve them. Not in an aggressive or overbearing way, of course, but always bearing in mind and respecting their inner pain. And the parents’ role is crucial in all of this.

In short, there can be no going behind our young patients’ backs: to do so is wrong and counterproductive, as it undermines the relationship that must be formed with the person at the centre of the treatment: the patient. Talking openly demands care and sensitivity, and we always remember this and routinely show both to whoever seeks our help. We weigh our words carefully, especially considering the most delicate participant in our discussions: the patient.
Over the years, we have learned that a good patient can overcome the disadvantage of absent parents, whereas no parent, however good they are, can ever make up for the absence of the patient, who is the true and only protagonist of scoliosis treatment.

My brace has helped me to grow up!

I’m Ilaria, and I have spent the past 6 years wearing a scoliosis brace.

At last, on 28/6/2021, after countless sacrifices, many, many moments when it felt like everything was against me, and others when things seemed to be going better, I finally came to the end of my “journey” with ISICO.

In spite of the difficulties I had along the way, as time went by my check-ups became increasingly encouraging, my back stabilised, and I was able to leave my brace off more and more; also, thanks to the exercises, the cosmetic appearance of my trunk improved.

There have obviously been lots of ups and downs over these years, but these have helped me to grow up: I now know that the low points teach you the importance of persevering, of keeping your head held high and always looking for the positive side of things.

Through wearing a brace, I have come to realise that I was a rather superficial person before. However, over time I have matured, and in fact, I learned to really appreciate the true value of situations and times spent both in and out of my brace.

My brace also helped me to appreciate what people really thought of me, and how much they cared about me.

When I first started wearing a brace, in the 4th year of primary school, my classmates and teachers didn’t know at all what it was for or understand why I needed to wear it. For them, there was no point to it, whereas I realised that it represented my “salvation”.
Luckily, over time and in my next school I came across people (classmates and teachers) who knew more about it and were always very supportive.

One very important factor in getting me to the point I’ve reached today was the “brace camp” holiday, organised by ISICO, that I had on the island of Asinara in Italy in 2018. There, I made some lasting friendships and learned that wearing a brace on holiday was no big deal, even if I could only leave it off for a few hours a day.

During that holiday, the physiotherapists taught us that doing postural exercises for our backs could actually be fun. They encouraged us and helped us to “put up” with keeping our braces on for the prescribed number of hours. What’s more, even though we weren’t able to spend very much time with our braces off, we were still able to enjoy the sea and the natural surroundings. They even taught us how to go in the water in a brace.

In the course of this whole experience, I have met many different people, with different stories, and this has helped me to see that while everyone at ISICO is on the same journey, each person experiences and approaches it in their own way.

I want to thank Dr Monia Lusini, who has always been a great support, whatever the circumstances, but my most heartfelt thanks go to my parents, who have always been there for me through thick and thin, supporting me and encouraging me not to give up and always to be proud of myself and persevere.

My parents are amazing, always ready to do anything for me and give me whatever I need.

Finally, I hope the things I have said might be of help to lots of other young brace wearers out there!

My message to them is: stay strong and stay brave because in the end all your sacrifices and hard work will pay off. Before you know it, you will be seeing the light at the end of the tunnel!

And don’t forget! Go in the sea as often as you like… just slip on your brace undershirt, brace and swimming costume and go for it! After all, there’s nothing quite like a refreshing dip ❤️

Friends and brace

Adolescence and bracing are two challenges that can be difficult to face simultaneously. 

In our view, this is perfectly natural and understandable.

Adolescence is usually perceived as a difficult phase during which young people are still immature, tend to be irrational, and struggle to control their emotions. However, research studies focusing on the development of the adolescent brain have recently debunked these myths, allowing adolescence to be understood, from a more modern perspective, as a life stage characterised by numerous possibilities, great creativity, and a desire to experiment.

However, it is also a time of great changes, when youngsters are particularly vulnerable. Their increasing need for freedom and independence sees them looking outside their immediate family; accordingly, friends assume a more and more central role, becoming the basis and starting point for building their self-awareness and personal identity.

At this age, then, finding yourself faced with the prospect of wearing a rigid brace for up to 23/24 hours a day certainly isn’t easy.

A young person who has just been prescribed a brace can experience many different emotions, which vary from individual to individual: some will feel angry, others sad; some may be fearful or feel ashamed.

Shame is an emotion that stems from the fear that others will judge us. What are my friends going to say when they see me in a brace? What will they think if they find out I have scoliosis? 

In adolescence, precisely because this is a time when we are still working out who we are, we can be particularly sensitive to the opinions of others; we want to fit in, and we fear rejection. 

For these reasons, having to wear a brace can be seen as an obstacle to the formation of friendships and early romantic attachments. It becomes a secret to be kept strictly within the family. Some youngsters try to keep their brace hidden under their clothes and avoid physical contact with others, to the point of avoiding those activities in which their brace would have to be exposed, and thus depriving themselves of a whole series of experiences. 

In this way, they become victims of their own secret.

Hiding a brace requires a lot of effort. Is it really the best thing to do?

Even though hiding is a natural and automatic response when we feel ashamed, it is also the most harmful. Instead, the least natural and least automatic (i.e. “telling the truth” and showing yourself) is the most beneficial! When you find out that you have to wear a brace, the best thing to do is to tell your friends and classmates about it immediately. Although this might seem difficult, it is far easier than trying to keep the fact a secret. Start by telling your closest friends, and then gradually share the news with everyone else.

You really have nothing at all to be ashamed of. Quite the opposite: you should be proud of what you are doing in order to have a healthy back!

Authors: Irene Ferrario, psychologist and Antonella Napolitano, physiotherapist