中国西部癌症相关认知障碍患儿父母的痛苦和需求：一项定性研究。
Parents' Distress and Demands for Children With Cancer-Related Cognitive Impairment in Western China: A Qualitative Study.
机构信息
School of Nursing, Chongqing Medical University, Chongqing, China.
Out-Patient Department, Children's Hospital of Chongqing Medical University, Chongqing, China.
出版信息
Cancer Med. 2024 Oct;13(19):e70257. doi: 10.1002/cam4.70257.
BACKGROUD
Cancer-related cognitive impairment is one of the common complications in children with cancer, but our understanding of their experience with cognitive deficits remains limited. From the perspective of parents, this study aimed to explore the distress and demands faced by children with cancer-related cognitive impairment, to provide references for developing targeted intervention strategies for cancer children.
METHODS
We used a purposeful sampling method to conduct semi-structured interviews with the parents of 18 children with cancer-related cognitive impairment. The transcripts were analyzed using Colaizzi's method.
RESULTS
Three categories and 11 subcategories were obtained from the data analysis, including diverse levels of cognitive impairment in children (speech communication difficulties, impaired executive function, attention deficit, and intellectual disability), persistent negative emotions (anxiety and worry, complaints and resentment, negative avoidance and positive experiences after psychological adjustment), multiple needs (need for disease information, need for professional management, and an urgent need for more external support).
CONCLUSION
Parents of children with cancer-related cognitive impairment face a significant psychological burden, coupled with confusion and numerous inquiries regarding the symptoms and management of their children's cognitive impairment. It is imperative for medical professionals to strengthen the dissemination of information related to cancer-associated cognitive impairments, while promptly recognizing and intervening in related symptoms. Rational allocation of resources, establishment of targeted support systems, and enhancement of social acceptance may be the key points that policymakers could consider. These efforts hold immense significance, as they play a pivotal role in elevating cognitive capabilities and enhancing the overall quality of life for children with cancer.
背景
癌症相关认知障碍是儿童癌症的常见并发症之一，但我们对其认知缺陷的体验仍知之甚少。本研究从父母的角度出发，旨在探讨癌症相关认知障碍儿童所面临的困扰和需求，为制定针对癌症儿童的干预策略提供参考。
方法
我们采用目的性抽样方法，对 18 名癌症相关认知障碍儿童的父母进行半结构式访谈。使用 Colaizzi 方法对转录本进行分析。
结果
从数据分析中得到了三个类别和 11 个子类别，包括儿童认知障碍的不同程度（言语沟通困难、执行功能受损、注意力缺陷和智力障碍）、持续的负面情绪（焦虑和担忧、抱怨和怨恨、消极回避和心理调整后的积极体验）以及多方面的需求（疾病信息需求、专业管理需求和更多外部支持的迫切需求）。
结论
癌症相关认知障碍儿童的父母面临着巨大的心理负担，同时对孩子认知障碍的症状和管理感到困惑和疑问。医疗专业人员有必要加强与癌症相关认知障碍相关的信息传播，及时识别和干预相关症状。合理分配资源、建立有针对性的支持系统以及增强社会接受度可能是政策制定者需要考虑的要点。这些努力具有重要意义，因为它们对于提高癌症儿童的认知能力和整体生活质量至关重要。
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