青少年癌症患者榜样教育模式的构建及幸福感的实证研究

The incidence of cancer in adolescents has been rising. It severely affects their physical and mental health, their experiences of happiness are seriously reduced. This has become a major problem affecting the decision-making and life development. The related research on happiness is going on in recent years. However, the study of the happiness in regard to the special crowd of adolescents with cancer is still in the initial stage. The early results obtained by the research team support that the sense of happiness is intensively expected to be improved for the young cancer patients. Also, due to the highly individual and dynamic characteristics, more scientific and effective intervention mode is urgently needed. Study is adolescent's life subject, and model is irreplaceable means of education. Concentrating on the crowd of adolescents as the subject, model education employs excellent typical characters to make the adolescents obtain a positive incentive. The pre-experiments in our team also confirm that peer education can promote adolescent cancer patients choose a positive attitude towards clinical treatment. Therefore, guided by the social learning theory and based on the framework of adolescent mental resilience model, the project intends to build a model education pattern, which covers the detailed intervention programs in related to various factors towards individual, disease, family and society. Further, the model developed in the present project will be used in the practical application on the investigation of the sense of happiness for young patients with cancer. The research conforms to the theme of the "Happy China" era, and provides theoretical basis and practical support for the development of psychological nursing in China.

青少年癌症发病率持续上升，严重影响其身心健康，其心理问题及幸福感体验下降，已成为影响治疗决策、人生发展的重大问题。近年来对幸福感的研究日益深入，但针对青少年癌症患者这一特殊人群幸福感的研究尚处于起步阶段，研究团队前期结果证明青少年癌症患者幸福感亟待提高，因其高度的个体性和动态性特点，迫切需要更为科学有效的干预模式。学习是青少年的生活主题，榜样实例是无可替代的教育手段，榜样教育研究的对象聚焦于青少年人群，采用优秀典型人物使青少年获得正向的激励作用，课题组预实验结果也证明同伴教育可促使青少年癌症患者选择积极态度面对治疗。因此，本项目拟以社会学习理论为指导，以青少年心理弹性模型为框架，构建覆盖“个体、疾病、家庭、社会”相关因素干预方案的“榜样教育模式”，并将该模式应用于青少年癌症患者幸福感的实证研究，顺应“幸福中国”时代主题，为心理护理在国内发展提供理论依据和实践支撑。

青年及青少年癌症发病率持续上升，严重威胁该群体正常成长。青年及青少年癌症患者是较为特殊的群体，患者处于身心发展、社会功能、人生观社会观形成的关键阶段，且癌症治疗复杂、周期长，不良反应众多，疲乏、衰弱等不适突出，心理痛苦普遍存在幸福感体验显著降低，已成为影响治疗决策、生活质量的重大问题。榜样教育在心理、认知、行为方面具有显著的实践意义，本项目以社会学习理论、自我效能理论、青少年创伤成长模型为指导，引入移动健康管理理念，聚焦青年及青少年癌症患者幸福感体验、心理痛苦、疲乏等方面，探讨结合榜样教育的干预方式，切实提升患者生活质量。.本项目在系统回顾青年及青少年癌症患者身心健康、生活体验、幸福感影响因素和现有干预措施基础上，通过质性研究、横断面调查等进一步明确了该类群体幸福感现况、影响因素，初步构建青年及青少年癌症患者幸福感认知框架，鼓励患者认清自我、挖掘内在积极力量；针对国内缺少特异性心理痛苦测评工具的问题，与加拿大麦克迈斯特大学研究团队联合汉化修订青年及青少年癌症患者心理痛苦量表（Cancer Distress Scales for Adolescent and Young Adults, CDS-AYA），经考评信效度良好，包括6个维度癌症影响、身体、情感、认知、癌症担忧、就业/学业，总分越高表明患者的心理痛苦程度越高，约77.16%患者存在心理痛苦体验；将移动健康引入青年及青少年癌症患者健康管理，开发青年及青少年癌症患者干预小程序，通过知识学习、榜样人物、病友互动等替代经验、直接经验方式对进行干预，提升患者青年及青少年癌症患者的健康状况，切实将榜样力量通过具体形式传递给患者。本研究共发表相关文章10篇（SCI2篇），专利2项，培养硕士研究生2名。本项目为青年及青少年癌症患者幸福感影响因素、心理痛苦现况及干预策略研究提供了依据，为评估国内该类患者心理痛苦程度提供了测评工具，同时移动化健康干预形式探索为丰富青年及青少年癌症患者健康管理策略提供了科学依据，具有重要的社会意义和临床应用价值。