Department of Psychology, University of Bath, Bath, UK.
Bristol Medical School, University of Bristol, Bristol, UK.
Eur J Cancer Care (Engl). 2021 Jul;30(4):e13417. doi: 10.1111/ecc.13417. Epub 2021 Jan 29.
Adolescents' cancer-related distress is more complex, severe, and long-lasting than that of children and adults. Parents adopt an active role in supporting their adolescent, reporting that adolescent cancer-related distress is the most problematic symptom parents experience. Research has predominantly focused on exploring adolescents' experiences of cancer-related distress, with little attention to how their parents experience their adolescent's cancer-related distress. Therefore, we aimed to explore parents' experiences of distress within the context of parenting an adolescent with cancer-related distress during or immediately subsequent to active treatment.
A total of 21 semi-structured interviews were conducted face-to-face or via telephone, with parents of adolescents aged 12-18 years from south-west England. Inductive reflexive thematic analysis was used to analyse the data.
Three themes were generated: "The contagion of distress", "Navigating breaking point" and "Developmental disruption". Parental distress transcended from adolescent cancer-related distress, eliciting uncertainty and challenging parenting limits. Parental distress was perpetuated by feelings that their adolescent had missed out on "normal" adolescence during and just after active treatment.
Parental distress reflected the multi-faceted nature of their adolescent's cancer-related distress. Findings advocate the importance of providing a parental voice within adolescent oncology populations. Developing tailored interventions to address parental distress are suggested.
青少年与癌症相关的痛苦比儿童和成人更为复杂、严重且持久。父母在支持青少年方面发挥积极作用,他们报告说,青少年与癌症相关的痛苦是父母经历的最成问题的症状。研究主要集中在探索青少年与癌症相关的痛苦体验上,而很少关注父母如何体验青少年的癌症相关痛苦。因此,我们旨在探讨父母在青少年癌症相关痛苦的活跃治疗期间或之后的育儿背景下的痛苦体验。
在英格兰西南部,对 12-18 岁青少年的父母进行了总共 21 次面对面或通过电话进行的半结构化访谈。使用归纳反思主题分析方法对数据进行分析。
产生了三个主题:“痛苦的蔓延”、“突破临界点”和“发展中断”。父母的痛苦超越了青少年与癌症相关的痛苦,引起了不确定性并挑战了育儿极限。父母的痛苦因感觉青少年在积极治疗期间和之后错过了“正常”青春期而加剧。
父母的痛苦反映了青少年与癌症相关的痛苦的多方面性质。研究结果主张在青少年肿瘤学人群中提供父母声音的重要性。建议制定针对父母痛苦的量身定制的干预措施。