Delane Linkiewich Spotlight: Tapping into the Value of Lived Experience

Although chronic pain is often an invisible illness, the impacts it can have on the lives of those living with it are profound.  

Clinical Child and Adolescent Psychology PhD student Delane Linkiewich hopes to support adolescents living with chronic pain through peer support groups, where they can connect with others who have similar lived experiences to share knowledge and build relationships. 

For her academic achievement, leadership, and citizenship, Delane has received the 2023 Magisteriate D.F. Forster Medal, the top convocation award for graduate students. Delane is an active advocate in the pain community and has co-authored seven peer-reviewed publications on studies with children and adolescents with chronic pain as well as patient engagement. She also contributes to campus life as a campus representative for the Canadian Psychological Association and helped to organize Pain Canada’s annual national conference for people with chronic pain — Putting the Pieces Together. 

Delane sat down with us to share about her personal experiences with chronic pain and how she hopes her research can improve the lives of others. 

What is your program and area of research? 

I’m in the Clinical Child and Adolescent Psychology PhD program. I did my master’s at in the same program at the U of G and am starting the second year of my PhD in the fall. 

My area of research really revolves around the social aspects of pediatric chronic pain, the relationships between children and adolescents, peers, caregivers and clinicians, and I’m particularly interested in peer support for adolescents with chronic pain.  

How would you explain your discipline and/or research to someone who wasn’t in your program? 

Chronic pain is defined as pain that lasts longer than three months. When adolescents experience chronic pain, it impacts them in a variety of physical, psychological, and social ways. Socially, adolescents with chronic pain tend to struggle with peer relationships because they don’t feel accepted and struggle to develop and maintain friendships. I focus on bringing adolescents with the shared experience of chronic pain together to decrease loneliness and isolation. 

In my master’s research, I assessed the peer support needs of adolescents with chronic pain and found that many of these adolescents are not receiving enough support from their peers without pain and would find it beneficial to receive support from other adolescents who do experience chronic pain.  

In the short term, the adolescents I talked to said that a peer support group would help them feel understood and give them a safe space where they belong. In the long term, it would help them develop meaningful relationships and build informational support that will help them cope in the future.  

My PhD dissertation builds on this research, as I’ll be developing, implementing, and evaluating a group peer support intervention for adolescents with chronic pain. 

What do you wish your colleagues/friends/family knew about your work?  

I wish people realized how chronic pain impacts people socially, as social factors are a core component to understanding and managing pain. I’m trying to bring more awareness of how someone’s social wellbeing also impacts other aspects of their overall wellbeing, including their psychological and physical health.  

Also, I wish people knew how important lived experience is. Having had chronic pain myself for 15 years, I realized I could use my experience to make a difference by sharing what it’s like to live with chronic pain. I think it’s incredibly important to include lived experience in my work and research - the point of research is to make a change for a group of people, or better understand them, so why not include those people in the research process? 

Why is your research important to you?  

As someone who has lived with chronic pain, I know what it can feel like. People have not understood or recognized that I had chronic pain because it’s an invisible illness.  

Because of this experience, I am very invested in improving the lives of others. Growing up, I didn’t have anyone my age who understood what it was like, so my research directly targets that problem. Through conversations I’ve had with people with lived experience as well as caregivers, I do believe that peer support can fill a really big gap.  

At the end of the day, the lived experience is what drives me and what makes my research really important to me, and I’m so grateful to get to do the work I do every day. 

Have you learned/discovered anything since beginning your studies/this initiative at Guelph that’s surprised you? If so, what?  

I’ve learned the critical importance of finding good mentors who can challenge and support you.  

I feel really honoured to get to work with my advisor, Dr. C. Meghan McMurtry, an incredible leader in the pediatric pain field. She challenges me to think critically and has supported me from the very beginning. When she interviewed me for the program, I brought forward the idea of peer support. She believed in the idea and let me go in my own direction for the research. 

I’m so grateful she’s connected me with many pain researchers and psychologists all over the world, expanding my network and exposing me to discussions that impact my work.  

What do you consider your biggest challenge?   

Completing a really intense graduate degree with a chronic illness is certainly a big challenge. Even though I’ve been living with chronic pain for 15 years, I still learn something new every day as new challenges come up.  

Although it’s challenging, I try not to let it get in the way, and of course take time when I need to. Some days are easier than others and it’s a constant learning process given the uncertainty of when my next pain flare will be, but one thing I have learned after living with chronic pain for so long is how to adapt and how to ask for help when needed. 

U of G has been a really great place for me to do my grad degree because my program is incredibly understanding. I use Student Accessibility Services and they’re awesome, and I have a lovely support network of my partner, friends, family, and students in my program. 

What are you most proud of? 

I’m very proud of my resiliency, my adaptability, and the growth in my ability to advocate and lead.  

I used to be really shy and have worked really hard to build up confidence so that I can speak for what I believe in and take the lead when necessary. I have managed to conduct research, complete clinical work with amazing people, and continue to be involved in and advocate for the pain community all while living with this illness that tries to push me down.  

I’m also proud of having a clear vision of what I wanted to accomplish since early in my undergrad degree. It’s so beautiful to see my ideas come to fruition. I get to do what I love, work towards the thing I set out to do so many years ago and see that it’s starting to make a difference.  

It has been so incredible to talk to adolescents in doing this work. Some of them even thanked me for doing the research which really gets me — it means I’m doing something meaningful. 

What drives you? 

People living with chronic pain, especially children and adolescents.  

I want to do everything I can to increase general awareness of chronic pain. Most people don’t know that 1 in 5 people live with chronic pain, and 11-38% of children and youth live with chronic pain. 

By improving awareness, I also hope to improve pain assessment and pain management. Pain is still very underassessed and undertreated, particularly acute pain that lasts less than 3 months. 2 out of 3 children get medical procedures without proper pain management! It’s hard to believe that something we expect to be the norm, such as providing children with proper pain management, continues not to happen. 

Overall, I hope that my work helps people living with pain and improves their quality of life. 

What do you plan to do with your degree/following this initiative?  

I want to do a postdoc and hopefully secure a faculty position at a Canadian university, where I can start a research lab of my own to study pediatric pain. Ideally, I would also like to work one to two days in a pediatric pain clinic each week so I can combine my love of clinical work with my passion for research. 

As I build my career, I want to pass on the mentorship that I’ve received to other people who are interested in researching pediatric pain and making a difference. I also want to make sure that the work I do is patient-oriented and that I’m engaging people with lived experience in the research process. 

Is there a fun or interesting fact about yourself that you’d like to share?  

I love doing jigsaw puzzles particularly intense ones with 3,000 pieces or more. If I had a bigger table, I’d probably do even bigger ones! 

Who knows, maybe that’s why I love research so much — you're putting together different pieces that don’t make sense individually but come together to create a final picture.