Zanotto Anna, Goodall Karen, Ellison Marion, McVittie Chris
Queen Margaret University, Edinburgh, UK.
University of Kansas Medical Center, Kansas City, KS, USA.
Psychol Health. 2025 Mar;40(3):474-491. doi: 10.1080/08870446.2023.2237995. Epub 2023 Jul 22.
Having a brain tumour can disrupt social roles and networks. Despite growing evidence on the significance of social support in adjustment to chronic illness, research rarely focuses on the role of relationships when coping with a brain tumour. The current study sought to explore individuals' experiences of social support, and the dynamics within their social relationships, following a diagnosis of a brain tumour.
Interpretative Phenomenological Analysis (IPA) was used as a methodological framework. Participants were 12 individuals (83% female) aged 29-54 years diagnosed with primary brain tumour (83% low grade), on average 3.5 years post-diagnosis. In-depth semi-structured interviews were conducted, transcribed verbatim, and analysed using IPA.
Five themes were identified: Coping together in the family; Being concerned about others; Giving and receiving support; Needing to share the experience; and Negotiating independence. The results highlighted that the illness affected a whole network of closest relationships, and that coping was not an individual task.
Coping with the condition was deeply socially embedded. There was a cost associated with seeking support and participants did not always ask for it, in order not to burden the caregivers. Talking to others with similar diagnoses provided a sense of validation and belonging.
患脑肿瘤会扰乱社会角色和社交网络。尽管越来越多的证据表明社会支持在慢性病适应过程中具有重要意义，但在应对脑肿瘤时，研究很少关注人际关系的作用。本研究旨在探讨脑肿瘤诊断后个体的社会支持体验及其社会关系中的动态变化。
采用解释现象学分析（IPA）作为方法框架。参与者为12名年龄在29 - 54岁之间的个体（83%为女性），被诊断为原发性脑肿瘤（83%为低级别），平均诊断后3.5年。进行了深入的半结构化访谈，逐字转录，并使用IPA进行分析。
确定了五个主题：在家庭中共同应对；关心他人；给予和接受支持；需要分享经历；以及协商独立性。结果表明，疾病影响了整个最亲密关系网络，应对并非个体任务。
应对这种疾病深深植根于社会之中。寻求支持存在成本，参与者为了不给照顾者增加负担并不总是寻求支持。与有类似诊断的人交谈能带来认可感和归属感。
