Parental Experiences of Adolescent Cancer-Related Pain: A Qualitative Study

Abstract

Abstract Objective Despite advancing medical treatments, pain remains a significant outcome of adolescent cancer, as both a problematic and distressing symptom. With adolescents spending substantial periods of time at home during cancer treatment, parents perceive themselves as central to the experience and management of adolescents’ pain. The present study aimed to explore parental experiences of adolescent cancer-related pain during, and recently after, completing cancer treatment. Methods We interviewed 21 parents of adolescents (aged 12–18 years) with cancer, recruited through a hospital in South West England. Interviews were analyzed using reflexive inductive thematic analysis. Results Two themes were generated. The first theme, “Parental perceptions of being at the heart of pain management,” focused on the role of parents in adolescents’ pain journeys, and the vast knowledge they gained. The second, “Adapting and readjusting expectations,” captured parents’ journeys in learning to adjust their lives according to adolescents’ pain and difficulties they faced throughout this process. Conclusions Findings highlighted parents’ crucial role throughout adolescents’ pain experiences; learning how to manage adolescents’ pain, and supporting them with the detrimental impact on their lives. The findings emphasize the importance of a multidisciplinary approach to supporting families to manage pain. They also indicate a need for targeted research studies investigating parental experiences of adolescent cancer-related pain. This will help professionals understand how best to support parents and adolescents throughout the cancer journey and ultimately improve the physical and psychological outcomes of young people in the longer term.