Patient Support and Community Activities, Danish Cancer Society Research Center, Copenhagen, Denmark.
Department of Sociology and Social Work, Aalborg University, Aalborg, Denmark.
Psychooncology. 2019 Jul;28(7):1438-1444. doi: 10.1002/pon.5093. Epub 2019 May 15.
Siblings of childhood cancer patients experience social challenges. The results presented in this article are part of a larger qualitative study aiming to generate empirical knowledge about social consequences of childhood cancer from the family's perspective.
Data were collected through interviews, observational studies, and questionnaires. The study included 68 childhood cancer patients, 39 siblings, and 39 parents from a total of 78 families. Grounded theory informed the data analysis.
Major life changes caused by childhood cancer entail an emotional hierarchy regarding the accommodation of each family member's need for help. This study identified a dynamic three-variable, four-adaption model for adaption strategies among siblings towards their parents, based on the sibling's perspective: (1) receives help without asking; (2) receives help after asking; (3) receives no help despite asking; and (4) receives no help and does not ask. Three variables are elaborative to understand the dynamic in adaption strategies: the patient's prognosis, the course of the disease, and the current situation of the diagnosed child. Even though the adaptions are reported by siblings, both patients and parents are aware of and concerned about the siblings' challenges.
These results have implications for practice and have the potential to improve social and health care professionals' awareness and ability to offer support and information needed by the families and the siblings. The knowledge presented in this article should be considered basic health care information in line with other information such as treatment protocols.
儿童癌症患者的兄弟姐妹会面临社交方面的挑战。本文呈现的研究结果是一项更大规模的定性研究的一部分，该研究旨在从家庭的角度出发，生成关于儿童癌症的社会后果的实证知识。
通过访谈、观察研究和问卷调查收集数据。该研究共纳入 78 个家庭中的 68 名儿童癌症患者、39 名兄弟姐妹和 39 名父母。扎根理论指导了数据分析。
儿童癌症带来的重大生活变化导致了家庭成员对彼此需求的帮助进行调整时的情感层次。基于兄弟姐妹的观点，本研究确定了一个动态的三变量、四适应模型，用于兄弟姐妹对父母的适应策略：（1）无需请求就获得帮助；（2）请求后获得帮助；（3）尽管请求但未获得帮助；（4）既未获得帮助也未请求。有三个变量详细说明了适应策略的动态性：患者的预后、疾病的过程和已确诊儿童的当前状况。尽管适应策略是由兄弟姐妹报告的，但患者和父母都意识到并关心兄弟姐妹所面临的挑战。
这些结果对实践具有启示意义，并有可能提高社会和卫生保健专业人员的意识和能力，为家庭和兄弟姐妹提供所需的支持和信息。本文介绍的知识应被视为基本的医疗保健信息，与治疗方案等其他信息并列。
