Lived Experiences of Adolescents Living With Primary Chronic Pain

Primary chronic pain (PCP), a relatively new classification, characterizes pain that is not a secondary response to an underlying primary condition such as trauma or cancer. This study explored the lived experience of adolescents with a diagnosis of PCP.

A qualitative methodology, Interpretative Description (ID), was used to guide our study. ID uses a constructivist approach and allows for clinician experience to guide a theoretical scaffold of inquiry, which can be refined as the data collection progresses. We interviewed fifteen adolescents (n = 15) living with PCP.

All participants in this sample reported struggling with diagnostic uncertainty, depression, and anxiety. Adding to their distress was the fact that our participants perceived that health care professionals did not believe them when they described their pain and its intensity.

While significant research is being conducted on PCP, participants believe there is a lack of knowledge about PCP as a diagnosis and thus there are limited resources and a lack of empathy and understanding for these adolescents.