摘要
因儿童罹患急性淋巴细胞白血病而遭受重创的家庭,往往难以及时获得足够的信息支持。深入研究这个群体的信息需求和信息行为,有望辅助医疗决策,拯救更多稚嫩生命,减轻病痛给家庭带来的恐惧、焦虑和无助,也能为信息职业者在该领域中发挥更大作用提供建议。文章对某相关群体进行历时两年的参与式观察,发现该群体面临着误导信息先入为主,信息来源良莠难判,需求多样、归因单一等信息获取障碍。为优化此类患儿家庭信息获取利用环境,需要公布权威信息、开放科研成果,创新科普资源、引导大众认知,打造信息平台、搭建沟通渠道,发挥图书馆功能、提供精细化健康信息服务。
Families devastated by children’s acute lymphoblastic leukemia(ALL)are often in lack of timely and adequate information support.Study on these families’information needs and information behaviors is expected to provide medical decision-making aids,save more juvenile lives,reduce the fear,anxiety and helplessness that ALL could bring to these families.Through two years of participatory observation on a relevant group,it is found out that these families have met various obstacles of information acquisition,such as preconceived misleading information,difficulties in justifying the information sources,diverse needs under single attribution,etc.To optimize the information acquisition environment for these families,it is necessary to provide open and authoritative medical information about ALL,innovate the channels and means of scientific popularization so as to improve the public’s cognition of ALL,and construct convenient information platforms for the public to communicate with medical and healthcare institutions.Besides,libraries should play a more active role in providing more accurate information services for these families.
作者
彭敏惠
吴钢
PENG Minhui;WU Gang
出处
《图书馆论坛》
CSSCI
北大核心
2024年第8期80-89,共10页
Library Tribune
关键词
儿童急性淋巴细胞白血病
家庭信息需求
信息获取
健康信息服务
参与式观察
acute lymphoblastic leukemia(ALL)
family information needs
information acquisition
health information services
participatory observation
