Abstract:

Objective To systematically review the experience of childhood cancer survivors（CCS） in long-term follow-up （LTFU） care,in order to provide a reference for the improvement of high-quality follow-up care for CCS in China. Methods We searched databases,including the PubMed,Embase,Web of Science,Cochrane Library,CINAHL,CNKI,CBM,VIP and Wanfang from inception to June 2021,to collect qualitative studies on the experience of LTFU care of CCS. The quality of included studies was evaluated according to JBI Critical Appraisal Tool for qualitative studies in Australia. Meta-synthesis was used to integrate results. Results A total of 12 studies were included,and 60 complete findings were summarized into 10 categories. These categories resulted in 3 synthesized findings. CCS were exhausted physically and mentally,and interpersonal relationships were strained,but they were still eager to get family and social support;the unmet disease management needs and poor communication with health care providers for CCS have caused limitations in their daily lives; although CCS have insufficient cognition of LTFU,they have strong motivation to participate and look forward to comprehensive LTFU nursing service. Conclusion The medical staff should pay attention to the CCS,give much attention to their follow-up experience,give them medical information,emotional and social support in time. It is also necessary to strengthen the standardized training of professionals,enrich the follow-up service content and participation forms,so as to ensure the sustainability of long-term follow-up and help CCS better adapt to the society.

Key words: Carcinoma, Follow-Up, Qualitative Research, Systematic Review, Pediatric Nursing

摘要：

目的 系统评价癌症患儿随访体验的质性研究,为提高癌症患儿随访质量提供参考依据。方法 计算机检索PubMed、Embase、Web of Science、Cochrane Library、CINAHL、中国知网、中国生物医学文献数据库、维普、万方数据库中关于癌症患儿随访体验和需求的质性研究,检索时限为建库至2021年6月。采用澳大利亚乔安娜布里格斯研究所循证卫生保健中心质性研究质量评价标准对文献质量进行评价,采用汇集性整合方法进行结果整合。结果 共纳入12篇文献,提炼60个研究结果,归纳形成10个新类别,合成3个整合结果：癌症患儿身心俱疲、人际关系紧张,但仍然心怀希望,渴望得到家庭和社会支持;癌症患儿疾病管理需求未得到满足以及与医护人员沟通不畅,导致其日常生活受限;尽管癌症患儿对随访的认知不足,但参与动机强烈,期待获得全面的随访。结论 医护人员应关注癌症患儿这一特殊群体,重视其随访体验,及时给予医疗信息、情感和社会支持,同时需加大对专业人员规范化培训的力度,丰富随访内容及参与形式,以确保随访的可持续性,帮助癌症患儿更好地适应社会。

关键词: 癌, 随访, 质性研究, 系统评价, 儿科护理学