Childhood illness is a unique tragedy and awful tragedy. According to Dr. Kate Wong, no one can explain it better than the kids themselves.
Wong is a nursing PhD graduate and through her experience with palliative care, she has begun adapting art therapy with children who are dealing with life-threatening illness.
“Sometimes they don’t always feel invited to say what’s on their mind,” she said.
Art therapy is a method of visualizing media as a conduit to explore individuals’ internal selves, according to Calgary-based Crate. Through her research, Wong has found that researchers let the art speak for itself, rather than trying to interpret it further.
“Art can provide a kind of a buffer between the conversation that we’re having and the experience that we’re talking about,” she said.
“Sometimes it’s easier to paint something, it’s a bit more metaphorical than it is to say something.”
Wong said that communicating with sick children varies case by case. It is a balance of sharing the information that is going to help them cope with their experiences, rather than discouraging them.
“There’s always a very tactful and individualized discussion around how much information children want to have,” she said.
“There’s a lot of instinct to try and protect children from discussing things, but sometimes it doesn’t serve them very well.”
Generally, art has been useful when patients have had a tough week and parents or practitioners notice their voice hasn’t been heard or expressed.
“Even just saying something like, ‘this has been a really difficult week and we haven’t really heard much how you feel about it,’ and just inviting them, noticing the fact that their voice hasn’t been present in the conversation, works wonders,” she said.
So far, many children have responded well to Wong’s conversation-through-art approach. One patient, suffering from sickle cell anemia, painted herself as a bird in a cage, with the cage representing her illness, isolated from the other birds.
Another, unable to finish her painting, painted her bedroom with four windows, each representing a different season that had passed since she’d been in the hospital.
“In my study, when silences came up, it was an inability to talk about something really difficult; sometimes the artwork was able to communicate that,” Wong said.
Funding gaps leave families without options for end-of-life pediatric care
Wong said a great point of tension surrounding end-of-life care is funding. Specifically, it’s challenging to divert funding from something that is life-saving to something that is life-affirming, she said.
“I understand the tension there, but it is so important. We only get one life and we only get one death, but it can be really meaningful for families and their bereavement to have had a better experience with death, with their child, because they have the support, because they’ve had a facility to go to,” said Wong.
Calgary’s Rotary Flames House, located next to the Alberta Children’s Hospital, is Alberta’s only pediatric hospice and the only one between Abbotsford, BC and Milton, Ontario, Wong said.
“In terms of accessibility for palliative care facilities, that’s a challenge. If you’re living in a rural area or you’re living in a city that doesn’t have a hospice or volunteer program, there isn’t an option for you,” she said.
“There’s so many competing priorities in terms of funding the healthcare system, but I think there are ways that we can support families and still maintain other areas of care.”
Artwork, painting specifically, does not resonate with every child. Wong said that emotions can be conveyed through media like Lego, theater and dance in similar ways.
“If you’re inviting a child who doesn’t like to do artwork, to use artwork to express themselves, that’s probably not their need,” she said.
“(Practitioner’s) need to be creative and open to letting the child take you where they are getting to go with it.”
