Photovoice: The power of photography brings teen cancer patients and siblings together

By Ryan Durgy, Intern, Communications and Public Affairs

As Childhood Cancer Awareness Month wraps up, the focus is on an innovative therapeutic program at SickKids which helps teens experience their cancer journeys through a different lens – the camera lens.

In its third year, Photovoice is a therapeutic photography program focused on creating a supportive peer-focused environment aimed at bringing a voice to teens with varying cancer diagnoses, while facilitating better communication between patients and their health-care teams.

“I’ve been on a journey from sickness to health - I’ve gone from needles in my arms to a camera in my hand,” Alex, 15, shared at the Photovoice exhibit, Through the Eyes of Teens with Cancer & Teen Siblings of Cancer Patients, as he discussed his treatment with Hodgkin’s lymphoma.

Alex said he was shocked about his diagnoses, relieved there was treatment and happy when his treatment was successful.

“I’ve had my own cheerleaders and champions here at SickKids,” Alex said. “The teammates on my journey have always been supportive and cheerful in the roles they played in my treatment. I had my own peer group thanks to Photovoice. I never felt alone.”

This year, for the first time, a Photovoice group for teen siblings of cancer patients was facilitated at the same time as the patient group. The exhibit featured photography from all nine participants of the program.

As the oldest in the family, Sabrina’s, 17, world changed when her younger sister Siham was diagnosed with Hodgkin’s lymphoma.

“Photos speak louder than words, which for the most part is true,” Sabrina shared. “Pictures say things that many can’t with their own words. Photovoice gave me an opportunity to speak my mind when I kept quiet during the circumstances my family had to go through.”

The seven-week program gave patients and siblings the opportunity to discuss the photos they took weekly, which focused on themes such as changes, feelings, restrictions and hope. The group was run by social workers in the Division of Haematology/Oncology. Sonia Lucchetta and Angela Yohan, oversaw the patient group, while Wendy Shama and Shawna Markowitz oversaw the teen sibling group.

“Those of us who work with teens know all too well that the demands of treatment can have a significant impact on their lives, particularly around their ability to engage with their academics, extracurricular activities and their all-important peers,” said Lucchetta.

According to Sonia, in Ontario 140 teens are diagnosed with cancer each year – with 60 per cent of them being treated at SickKids.

“Cancer has a significant impact on all family members and siblings are often left out, as the focus is on the child going through treatment,” Shama added. “We felt it was important to also provide the opportunity for teen siblings of cancer patients to connect with other teen siblings.”

The audience at the Photovoice exhibit viewed the photos, which were accompanied with narratives participants shared in their group sessions.

“When I first came to the hospital, I was very scared,” Alex said. “When I found out about the treatment I needed – I hated needles, it was one of the scariest things ever… but it got better over time.”

Alex said his photo of a tree in the winter without its leaves represents his diagnoses, while the tree growing new leaves in the spring represents his successful treatment and him feeling better again.

“I didn’t really have anybody to talk about my feelings with until I found the Photovoice group,” Alex said. “I felt better about sharing how I felt and seeing how everyone else was feeling. It was all similar – everyone kept feeling better the more they got through it.”

With 30 books in her collection, you could say that Siham is a bit of a bookworm – something her photo on display at the Photovoice exhibition showcased.

“When I was going through treatment for the past couple of months, I would always take out a book and read it,” Siham said. “I enjoyed it because it distracted me from what was going on and I could relate to what the characters in the book were going through.”

Sabrina’s photo features a special moment captured with her younger sister – holding hands as a show of support for her sibling as she underwent treatment.

“This photo represents me being there beside her and having her back,” Sabrina said. “Whatever she is going through, I’m going through it too and she’s not alone.”

After five weeks of treatment for lymphoblastic lymphoma, Ryan took his photo after returning home as an out-patient.

“The first thing I started to do after coming home was going on bike rides because I wasn’t back in school yet,” Ryan said. “I would go to the cemetery in the evening, grab a seat on a bench and relax there and think about stuff.”

As the seasons transitioned from winter to spring, Athrun snapped a picture of a bird perched on a telephone wire near his home.

“My older brother, Ryan, was diagnosed with cancer in the winter,” Athrun said. “He was going through intense chemo at the time. It’s spring in my picture and the bird represents my brother coming home soon as the seasons change."

“When you hear about cancer it’s an overbearing word,” Kiera said. “In my picture you can see a reflection out a car window, which shows more detail and a change to the original picture.”

Kiera spoke of another picture she took during the program, which became increasingly meaningful as the result of a printing error.

“It was upside down when it was printed out, which I thought was cool because it reminded me of how your world can be turned upside down when someone you love is diagnosed with cancer.”

Clearly, the photos provided a snapshot into the unique stories of the patients and siblings involved in the program and helped everyone involved see the bigger picture.

The Photovoice program is supported by the Garron Family Cancer Centre.