Art therapy has an important role to play in hospitals for children and adults. In this article I speak with a friend Penny whose daughter was receiving medical treatment over many months, about their experience of play therapy in an Australian hospital.
“Often, children are unable to verbally express what they are feeling; thus, in play therapy toys serve as children’s words and play as their language.”
– Garry Landreth
Thanks so much for talking with me about this. Can you explain a little bit about what your daughter was diagnosed with and what her medical treatment is?
After seeing 4 different doctors, she received an official diagnosis in January this year – we were told she had Scleroderma and was going to go to hospital in the next 48 hours, for three days of treatment. Scleroderma is a rare, chronic autoimmune disease. Chronic – meaning it will occur for a long time or continuously. Autoimmune – meaning our daughter’s immune system is attacking itself. Her body is attacking itself by producing too much collagen. Collagen is a vital protein in the human body. It is the main component of connective tissue and the substance that holds the whole body together. Too little and your body would fall apart. Too much and it will turn you into a statue. Hence, scleroderma is a Greek word meaning “hard skin”. In our daughter’s case her body is producing too much collagen and it is depositing itself in a linear fashion along her upper limbs. She has the localised type, meaning it will not affect her organs, however if left untreated it would result in deformed limbs and severe mobility issues. This is because as the skin hardens it loses the ability to grow and also move. When it crosses a joint line it impacts the movement of that joint as it affects the skin, connective tissue, muscles and bones underneath. With a child it is a concern as they still have a lot of growing to do.
As there is no cure, the main type of treatment is to attempt to calm down the immune system. This is done using pulse steroid therapy for an initial 6 months and then longer term immunosuppressant (methotrexate). Methotrexate takes at least 3 months to start working which is why the treatment is kick started with high dose steroids. High dose steroids, together with methotrexate mean that her immune system is suppressed and she is more susceptible to illnesses.
She’s stopped her infusions now but she has to do bloods and clinic every two months. She gets joint pains from the cold, similar to people with arthritis. When people hear rheumatology, they often think of old people. In fact there are thousands of kids in Australia with juvenile arthritis and other juvenile rheumatic conditions, but it’s just not well known. Juvenile scleroderma is so rare, we only know of 4 other children in Australia with this condition.
When in her treatment did your daughter first try play therapy*?
When she went in for this first treatment at the Royal Children’s Hospital (Melbourne), they kept the cannula in for the full 3 days. Inserting the cannula was pretty traumatic, so after those 3 days she was pretty terrified of hospitals in general. After that first visit she’d have to go for half a day for treatment or a full day of treatment and clinic. The nurses and rheumatology team arranged the play therapy before our second visit.
You know that feeling when you have to take a dog to the vet they get terrified, they know what’s about to come? That’s what it was like returning for hospital after her first experience of treatment. They said that because our daughter is going to be coming in and out of hospital we need to make sure she has a better experience and feels it’s ok.
How did you hear about the art therapy service at the hospital?
They had booked us in an hour early so that our daughter could talk to the play therapist – they had a range of things like beads, painting, so we were sitting there painting. The play therapist gave her a calico doll, and asked her to paint an expression on the face on the doll, and my daughter was able to talk about how she was nervous about the visit. The therapist was probably with us for about an hour and then had to go to the next patient.
What were your first impressions?
The great thing was she could keep painting right through her treatment – little tables and chairs were set up in the middle and they could do puzzles and paintings or draw her own butterfly or fairy wings while her IV was in.
Our daughter would take back that doll every time she went to hospital, because she associated it with her treatment.
The dolly even got to have an IV taped on to her and pretend to have treatment.
What I also appreciate is that our daughter leads the activity. That’s really important because no matter how great the medical staff are (and they have been great), the experience of hospital is really hard for kids. They have lots of new people coming up to them, they have to take their clothes off, they have to do tests and they don’t really get a say in what comes next. With the play therapy she gets to have a say in what she does, and what she feels like doing.
Actually the hospital itself is a playful environment; they have a Meerkat enclosure, a big fish tank and a large sculpture in the foyer and the staff are always really cheerful.
What benefits do you think she got from it?
Without the art therapy I dread to think what our days in hospital would have been like – it would have had a very different psychological impact on her and us.
It makes the whole procedure better – it improves the whole experience of the treatment – there’s something else to focus on.
Did you know much about play therapy/ art therapy before this experience?
Not really. I’d heard of it but to be honest, before this I thought it was a wishy washy thing, I didn’t quite understand the experience of it. But it’s made a huge difference to her whole experience of enduring medical procedures, and of hospital.
Because I didn’t understand the benefits of this program I can imagine there would be challenges with funding this in public hospital. It must be hard to describe the benefit to people who haven’t experienced it or seen it in action, but I wish there could be more done so that every patient in the hospital could experience this.
Has the art therapy experience changed how your daughter relates to art making at home?
She’s always been quite artistic, especially in kindergarten, but at school there was less focus on that. She is home more at the moment because of the side effects of the medication; she’s definitely doing more arts and crafts at home, it gives her something to do when she’s off sick.
She also gets Occupational Therapy – they give her exercises to do. They’ve told us ‘you can never do enough play doh’ – it’s good for fine motor skills. She has to work with her hands, to keep her joints moving.
These days she goes between wanting to be a doctor and wanting to be an artist when she grows up.
For more information on juvenile scleroderma see this page from the Scleroderma Foundation