“I can be an open book”: How peer support within cancer care is helping patients, family members and caregivers

Jeff and Carol, Peer Support Program in the cancer program

March 19, 2024

When Jeff Nielsen’s wife was diagnosed with cancer in August 2023, he leaned on his family and friends as he became his wife’s caregiver. “I never thought this would happen. I don’t think anybody does,” Nielsen shares. “But I felt the need to speak with someone beyond our circle.”

The Peer Support Program was launched in October 2023 in the London Regional Cancer Program (LRCP) at London Health Sciences Centre (LHSC). Developed by the Cancer Care Patient and Family/Caregiver Advisory Council, the program is supported by the South West Regional Cancer Program (SWRCP) and is available in-person, or virtually via telephone or video call. 

The Peer Support Program provides cancer patients, families and caregivers the opportunity, at any point in their cancer journey, to connect one-on-one with a peer support volunteer who has had their own cancer experiences. The program matches volunteer peer supports with cancer patients, as well as families and caregivers of cancer patients. Volunteers have a wide range of cancer experiences from being a patient, family member, caregiver or health care professional and they are matched with peers based on peer preferences.

Volunteers use their active listening skills to guide peers through emotional, social, interpersonal and practical aspects of the cancer journey and provide non-judgmental, inclusive, and non-therapeutic support. They can also help peers navigate and share information about cancer resources and services to help them manage their cancer journey, or the journey of a loved one.

Nielsen knew he needed extra support to help process and navigate his role as a caregiver and went online to search for peer support – that is how he found the Peer Support Program in LHSC’s cancer program. He filled out the online request form and was matched with Carol Wilkinson, his current Peer Support Program volunteer.

“I’ve been volunteering at the cancer program lab for six years,” Wilkinson says. “I have seen people from many different walks of life in a variety of situations and when I heard about this opportunity to help people navigate the cancer journey in a new way, I thought I’d be able to put my years of experience to use in these interactions.”

Wilkinson’s father passed away from lung cancer 37 years ago, and, she notes, support for cancer patients at that time was not the same. 

“I was 26 years old when my father passed away and I needed someone to talk to that knew what it was like to have a sick family member. I couldn’t find it,” shares Wilkinson. “I want to be a part of a person’s support network because I know the value in having that extra person that isn’t a friend or family member to talk to. Through my personal experience, and through my volunteer experiences in the cancer program, I thought the Peer Support Program was a good match.”

To ready volunteers to provide support for patients, family members and caregivers in their one-on-one interactions, the Peer Support Program has partnered with Wellspring Cancer Support Foundation to provide comprehensive training. The training takes place over two weeks and is made up of book-based and practical learning that is a mix of virtual and self-paced. This includes practicing possible scenarios and responses the volunteers may encounter. 

Wilkinson shares, “I felt very supported through the entire training process and I was matched with Jeff at the end of October. I have found this whole process and experience to be so valuable and meaningful as a volunteer.”

Nielsen is grateful for the Peer Support Program. “It’s a great program with great people involved. I can’t speak highly of it enough,” he shares. “My family and friends are wonderful supports, but with them I felt like I couldn’t always say everything that’s on my mind. There’s a sense of holding some things back because I want to be strong and not have others worry about me. With Carol, I am able to be completely open and I know there’s no judgement. The first time we talked I let out all those feelings I’ve been holding back – it was gut-wrenching and relieving.”

Nielsen shares that it’s often hard to stay strong as a caregiver. It’s not always the cancer that’s causing stress and anxiety, but the challenging events that can happen as a person battles cancer such as experiencing negative side effects to medications or dealing with secondary infections. 

“When I leave meetings with Carol, I feel like I’ve unburdened everything that I’ve bottled up,” Nielsen notes. “Since we’re not friends, I feel freer to say what’s on my mind and I do – in a nice way, of course – and I know she understands.”

Nielsen’s wife was recently given some positive news about the state of her disease and Nielsen is cautiously optimistic. “We’re not ready to say goodbye, there’s so much more we want to do. I’m starting to see some of her spirit back and that picks up my spirit,” he says. “I don’t think things will be like they were, but I suppose time will tell.”

Nielsen continues to speak with Wilkinson in regular meetings. He is thankful for her calm demeanor and how spending time with her made the cancer journey seem less doom and gloom, especially while waiting for his wife’s test results.

“Access to programs like this are so important and I am so grateful I reached out for the support I needed,” Nielsen says.

If you are a cancer patient or the family member or caregiver of a cancer patient at London Health Sciences Centre and want to learn more about the Peer Support Program and request peer support, please visit the Peer Support Program webpage on LHSC’s website. 

If you are interested in becoming a volunteer peer support person, please visit the Peer Support Volunteer Role webpage on LHSC’s website.