Department of Psychology, University of Bath, UK.
Bristol Medical School, University of Bristol, UK.
J Pediatr Psychol. 2022 Sep 15;47(9):1071-1080. doi: 10.1093/jpepsy/jsac047.
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.
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.
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.
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.
尽管医学治疗在不断进步，但疼痛仍然是青少年癌症的一个严重后果，既是一个问题，也是一个令人痛苦的症状。由于青少年在癌症治疗期间大部分时间都待在家里，父母认为自己是青少年疼痛体验和管理的核心。本研究旨在探讨父母在青少年癌症治疗期间和最近结束癌症治疗后对青少年癌症相关疼痛的体验。
我们通过英格兰西南部的一家医院招募了 21 名青少年（12-18 岁）癌症患者的父母进行访谈。采用反思性归纳主题分析对访谈进行分析。
生成了两个主题。第一个主题是“父母对作为疼痛管理核心的看法”，重点关注父母在青少年疼痛旅程中的作用以及他们获得的大量知识。第二个主题是“适应和调整期望”，捕捉到父母在学习根据青少年的疼痛和他们在这个过程中面临的困难来调整生活方面的旅程。
研究结果强调了父母在青少年疼痛体验中的关键作用；学习如何管理青少年的疼痛，并支持他们应对生活的不利影响。研究结果强调了多学科方法支持家庭管理疼痛的重要性。它们还表明需要针对青少年癌症相关疼痛的父母体验进行研究，以帮助专业人员了解如何在癌症治疗过程中最好地支持父母和青少年，最终从长远来看改善年轻人的身体和心理结果。
