You Are Not Alone

Research assistant aims to investigate how peer support interventions can help young people living with chronic pain.

Danica Erickson, Department of Family Medicine - 18 February 2020

In late 2019, Delane Linkiewich became the first researcher with only an undergraduate degree to present at the Department of Family Medicine research development rounds, a bold move for someone not yet under the direction of a formal research supervisor. Her proposed area of research: peer support interventions for pediatric chronic pain patients. It's a topic she is familiar with, having spent the majority of her adolescent life with chronic pain resulting from a car accident she was in when she was 12 years old.

As a teenager, Linkiewich was one of a small number of people accepted into a multidisciplinary chronic pain clinic, an opportunity she credits with making her who she is today. "As a child living with chronic pain, I was very upset and struggled. It was through seeing a psychologist that I realized I can control my pain, my pain does not control me. So I don't let it get in the way of the things that I do." The only interaction she had with other kids at the clinic was in a course called Pain 101. While she recognized the course was life-changing later on in her life, she points out that moody teenagers don't want to be at a hospital doing these things, so she wasn't particularly invested in making connections at the time. In addition, while she met other people her own age, there was no emphasis on making connections aside from completing the worksheets and homework required to help her live with chronic pain. "I really didn't have anyone to talk to," she recalls, "It was more as an adult that I realized having someone to talk to about chronic pain was an option."

Linkiewich proceeded on to obtain a degree at the University of Alberta, working toward her long-term goal of becoming a psychologist. In the beginning of her university career, she didn't know exactly what kind of psychologist she wanted to be. However, her career aspirations took a turn during the second year of her psychology degree program at the University of Alberta. Linkiewich was given a class assignment to write about any topic she wanted, which led her to share her experiences of living with chronic pain. It was when she reflected back on these experiences that she realized she wanted to be a clinical psychologist for children and adolescents with chronic pain.

Her undergraduate program didn't offer options to do pain research but she was determined to work on her own chronic pain research because she was so passionate about it. She did a number of independent studies, worked in a lab called the Peers Lab looking at adolescent peer relationships and studied in the Group Processes and Leadership Lab to learn how groups and peer relations function. She realized then that peer support was something that she never had. "I didn't have a lot of friends who understood why I was missing so much school, why I was upset all the time, why I couldn't go to gym class, why I couldn't carry a bunch of things in my bag, things like that. On the other hand I had friends who would say, "'Oh yeah, my knee hurts sometimes I totally understand what you are saying'." This was frustrating for Linkiewich as she started feeling very alone because there weren't any adolescents her own age that she could talk to who also had chronic pain and with whom she could relate.

Following the completion of her degree program, Linkiewich re-enrolled at the U of A in open studies for a semester to do a systematized review on peer support interventions for people with chronic pain to see what interventions were out there and if any work had been done on this topic in chronic pain. She found that there were not many peer support interventions for chronic pain patients in general, but notably, for children and adolescents living with chronic pain, there was virtually nothing.

One in five people in Canada lives with chronic pain, but it's often invisible and remains somewhat mysterious even within the medical community. Although the opioid crisis has brought some awareness to the condition, most people have no idea what chronic pain is and how it impacts lives. People with chronic pain may look fine but may actually be in incredible pain, and that pain affects emotional and psychological well-being, school, work, and relationships in addition to physical well-being. "There was one day in high school where I was fine, and the next day I could literally not dress myself. Pain doesn't look the same for each person." Linkiewich notes. It's also a common misconception that only old people have chronic pain and kids can't or don't experience chronic pain. She hopes awareness about chronic pain will become more high profile, and the stigma associated with it will decrease, similar to the way awareness and acceptance has decreased the stigma around mental illness.

Linkiewich is excited about the possibility of facilitating information-sharing between young people experiencing chronic pain, because she believes they have a lot of positive experiences to share and help others. Relationships with peers and friendships are important in the lives of adolescents, and she is hopeful that peer support interventions may indirectly result in less pain in the long term if young people can connect and introduce each other to new activities or treatment options that have been helpful to them.

The limited research available about peer support interventions for pediatric chronic pain means Linkiewich is looking at an extended timeframe for reaching her goal, but she's passionate about the potential and prepared for the challenges ahead. She has been accepted into the Clinical Child and Adolescent Psychology Program at the University of Guelph, where she will work with one of Canada's most prominent chronic pain pediatric researchers, so she can investigate peer support interventions for adolescents living with chronic pain. She calls her project You Are Not Alone because she knows chronic pain can be a very dark place and she wants people to know they don't have to go through their journey alone. She wants children and adolescents to be able to develop friendships that can get them through difficult times, whether those relationships are long term or temporary. "I just want people, especially children and adolescents, with chronic pain to know they are not alone."