Department of Community Health and Health Behavior, School of Public Health and Health Professions, University at Buffalo, Buffalo, NY 14214, USA.
Sociol Health Illn. 2012 Mar;34(3):444-58. doi: 10.1111/j.1467-9566.2011.01386.x. Epub 2011 Aug 19.
There is a growing interest in understanding the effect that online information-seeking has on patients' experiences, empowerment and interactions with healthcare providers. This mixed-methods study combines surveys and in-depth interviews with 41 parents of paediatric cancer patients in the USA to examine how parents think about, evaluate, access and use the internet to seek information related to their child's cancer. We find that, during the acute crisis of a child being diagnosed with cancer, parents preferred to receive information related to their child's diagnosis, prognosis and treatment options from a trusted healthcare provider rather than through the internet. We find that access to medically related cancer information through the internet was deemed to be untrustworthy and frightening. Parents' reasons for avoiding online information-seeking included fear of what they might find out, uncertainty about the accuracy of information online, being overloaded by the volume of information online and having been told not to go online by oncologists. Some parents also had logistical barriers to accessing the internet. While most parents did not turn to the internet as a source of health-related information, many did use it to connect with sources of social support throughout their child's illness.
人们越来越关注在线信息搜索对患者体验、赋权以及与医疗保健提供者互动的影响。本混合方法研究通过调查和深入访谈的方式，对美国 41 名儿科癌症患者的家长进行了研究，以了解家长如何考虑、评估、获取和使用互联网来寻找与孩子癌症相关的信息。我们发现，在孩子被诊断出癌症的急性危机期间，家长更愿意从可信赖的医疗保健提供者那里获得与孩子诊断、预后和治疗方案相关的信息，而不是通过互联网。我们发现，通过互联网获取医学相关的癌症信息被认为是不可靠和可怕的。家长避免在线信息搜索的原因包括担心自己可能会发现什么，对在线信息的准确性感到不确定，被互联网上的信息量所淹没，以及被肿瘤医生告知不要上网。一些家长也存在上网的实际障碍。尽管大多数家长并未将互联网作为获取健康相关信息的来源，但许多家长在孩子患病期间确实利用互联网与社会支持来源建立联系。
