Exploring the Lived Experiences of Adult Survivors of Childhood Cancer with Chronic Pain: A Qualitative Examination

Exploring the Lived Experiences of Adult Survivors of Childhood Cancer with Chronic Pain: A Qualitative Examination

Thanks to major advances in treatment over the past 50 years, there is a growing population of adult survivors of childhood cancer. Yet, both the cancer itself and life-saving treatments can lead to long-term mental and physical health challenges, known as “late effects.” One of the most common and distressing of these is chronic pain, which can affect daily life, mental health, and overall quality of life. Despite this, pain remains undertreated both during treatment and in survivorship.

This study aims to better understand the pain experiences of adult survivors of childhood cancer. Specifically, we want to better understand survivors’ experience of pain over time, the physcial and psychosocial impact, and survivors’ experiences with the healthcare system and providers, including adequate pain treatment. By listening directly to survivors, our goal is to improve how chronic pain is understood, assessed, and treated across the cancer trajectory.

Who can participate?

We are looking for Adults (18+) living in Canada or the US who:

• were diagnosed with cancer before the age of 18
• are at least 5 years post-diagnosis
• are not currently undergoing cancer treatment, and have no evidence of active cancer
• are currently experiencing chronic pain (pain lasting 3 months or more)
• are able to speak and read English
• are able to participate in an online Zoom-based interview

What will you be asked to do?

If you decide to sign up, you would be asked to:

• Complete a short online eligibility consent and screening (5 minutes)
• Complete an online consent to participate in the study (5 minutes)
• Complete a brief online survey including demographic, medical, and mental health questions, as well as questions about your pain experience, interactions with the healthcare system and pain support and service utilization (10-15 minutes)
• Participate in a one-on-one Zoom interview about your pain experiences during treatment and in survivorship (approximately 60 minutes; can be split into two sessions if needed)

Interested in this study?

Email us at alberts.lab@concordia.ca or click here to see if you are eligible.