“What will I tell my children?” This is one of the first questions that a parent who has been diagnosed with cancer asks. To ensure that the needs of the entire family are met, a donor-funded pilot study is aiming to improve the quality of life for cancer patients by addressing the needs of their children.
The one-year pilot study, which began in November 2019, is based at Juravinski Hospital and Cancer Centre, and the Child Life Program at McMaster Children’s Hospital is providing consultation and support services.
“When patients are diagnosed with cancer, they may be referred to a social worker to help them adjust to their illness,” explains Social Worker Ruth Locis. “During this process, they may ask how their children will be affected by the diagnosis. This is when we will refer them to a Child Life Specialist.”
Child Life Specialists help children cope with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss and bereavement. They use evidence-based, age- appropriate means to help children better understand what is happening. As a result, this helps reduce their fear, anxiety and pain.
“We take a complex cancer diagnosis and explain it to children and adolescents in a way that allows them to process the diagnosis,” says Child Life Specialist Heather McKean. “We also can provide support if their loved one is at end-of-life. Each case is unique and tailored to the needs of the family. For example, we may use dolls to teach younger children, but use more detailed diagrams for adolescents.”
“It’s rewarding to see the positive outcomes as I help support and follow families on the cancer journey.”
Heather is integrated into the supportive care team at Juravinski Cancer Centre, so families coping with a cancer diagnosis can receive guidance from the very beginning. In some instances, support can be provided in the community or at Hamilton General Hospital, where patients may be treated for brain or spine cancer.
“We also have cases where a parent is diagnosed with cancer and their children have pre-existing chronic conditions,” says Heather. “This is when Juravinski Hospital and Cancer Centre and McMaster Children’s Hospital collaborate to ensure the child’s physical and psychological needs are met.”
Research in action
As an active research study, parents are asked if information about their care can be documented for the study. However, regardless of whether they participate in the study or not, they still receive these supportive services.
“Juravinski Cancer Centre is the first cancer centre in Ontario to have a Child-Life-Specialist piloted program,” says Ruth. “We hope our research findings will demonstrate the important need for adult patients to have these services for their families.”
By May 2020, Heather has consulted with more than 70 families and she expects that number to grow beyond 100 families by the time the pilot wraps up in November.
“I appreciate helping parents and caregivers navigate these difficult conversations with children in age-appropriate ways,” says Heather. “It’s rewarding to see the positive outcomes as I help support and follow families on the cancer journey.”