Cox T
Centre for Rural Health, School of Health Sciences, University of Tasmania, Launceston, Tas., Australia.
Eur J Cancer Care (Engl). 2018 Jan;27(1). doi: 10.1111/ecc.12499. Epub 2016 Apr 20.
Much research examining primary caregivers of children with cancer has focused on their distress levels and coping strategies. Drawing on qualitative data from semi-structured interviews with 38 Australian primary caregivers, this article examines their experiences through their child's cancer diagnosis and early treatment period. However, it does so retrospectively with their child in remission (a minimum of 5 years post diagnosis). This methodology gave caregivers the time to evaluate and reflect on their experiences through their child's cancer. Interviews with caregivers were recorded, transcribed verbatim and analysed using a grounded constant comparison approach. The concept of neo-normal was developed to represent caregivers' responses to having a child with cancer - characterised by the existential threat of cancer, the shattering of notions of control and certainty in their capacity to protect their child's well-being and reliance on medical intervention. Paradoxically, conceding to this disempowered position facilitated new ways to be a caregiver of a child with cancer. The findings illustrate the social processes and cultural context in which caregivers construct new normalising strategies as they transition through their child's illness. The study also gives recognition to the vital care, advocacy and pseudo-nursing contributions that caregivers bring to the paediatric oncology setting.
许多针对癌症患儿主要照料者的研究都聚焦于他们的痛苦程度和应对策略。本文利用对38名澳大利亚主要照料者进行半结构化访谈所得的定性数据，考察了他们在孩子癌症诊断及早期治疗阶段的经历。不过，这是在他们的孩子处于缓解期（诊断后至少5年）时进行的回顾性研究。这种方法让照料者有时间通过孩子患癌的经历来评估和反思自身经历。对照料者的访谈进行了录音、逐字转录，并采用扎根恒定比较法进行分析。“新常态化”这一概念的提出是为了描述照料者对孩子患癌的反应——其特点是癌症带来的生存威胁、对自身保护孩子健康能力的控制感和确定感的破灭，以及对医疗干预的依赖。矛盾的是，接受这种无力的状态促成了成为癌症患儿照料者的新方式。研究结果说明了照料者在孩子患病期间构建新常态化策略的社会过程和文化背景。该研究还认可了照料者在儿科肿瘤护理环境中所做出的至关重要的护理、支持和准护理贡献。
