“I learned it was okay to be angry, sad, and hurt and to feel hard done by. Talking to others I realized that I don’t have to be ashamed or feel I’m a bad wife if I’m angry.”
That’s a participant in a Cancer Chat caregiver support group, describing how she had benefited from the group.
Cancer Chat provides free and professionally-led online support groups for Canadians affected by cancer, including patients and caregivers. The program started a decade ago in B.C. to meet the needs of a large rural and remote population, and has since spread across Canada. It is currently operated out of the De Souza Institute in Toronto.
Diane Manii, a Cancer Chat facilitator, says there are many reasons why a caregiver might choose an online support group. It’s convenient – caregivers can join when the person they’re caring for is asleep or having chemotherapy. Some people are more comfortable with the relative anonymity of an online group, or don’t want to return to a cancer centre to be part of an in-person group. “Participants have told me that typing things out enables them to think more, and connect with their feelings. And some tell me that they can still type when they’re crying.”
Manii says online support groups are very different from face to face groups. “You don’t have the visual cues,” she says. “It definitely takes a bit of adjustment, for participants and for facilitators. But it’s amazing how quickly people come together and support one another.” Some groups focus on specific issues like insomnia and coping skills. Art therapy and mindfulness meditation have both been offered online. When the formal eight- or ten-session program is complete, participants are encouraged to stay in touch informally.
The Cancer Chat program has several key success factors, Manii says.
- The system operates on a separate secure, password-protected network to ensure privacy and confidentiality.
- The facilitators are experienced professionals who follow strict standards of practice.
- Participants are screened during registration and referred elsewhere if there are clinical “red flags.”
- Participants are introduced to the technology and guidelines for participation before their first session.
- Participants are anonymous.
- All groups are evaluated, and the feedback is used to improve the program.
Cancer Chat is currently supported by the Canadian Partnership Against Cancer (CPAC) and partners across Canada, but the agreement with CPAC is over at the end of 2016. “We will be challenged,” Manii says. “We’re looking for more partners and somehow we’ll make it work.”
Know of any other online support groups for family caregivers? Drop us a line: firstname.lastname@example.org