Lupton Deborah, Maslen Sarah
News and Media Research Centre, Faculty of Arts & Design, University of Canberra, Bruce, Australia.
Faculty of Business, Government and Law, University of Canberra, Bruce, Australia.
J Med Internet Res. 2019 Jan 25;21(1):e11481. doi: 10.2196/11481.
A range of digital technologies are available to lay people to find, share, and generate health-related information. Few studies have directed attention specifically to how women are using these technologies from the diverse array available to them. Even fewer have focused on Australian women's use of digital health.
The Australian Women and Digital Health Project aimed to investigate which types of digital technologies women used regularly for health-related purposes and which they found most helpful and useful. Qualitative methods-semistructured interviews and focus groups-were employed to shed light on the situated complexities of the participants' enactments of digital health technologies. The project adopted a feminist new materialism theoretical perspective, focusing on the affordances, relational connections, and affective forces that came together to open up or close off the agential capacities generated with and through these enactments.
The project comprised two separate studies including a total of 66 women. In study 1, 36 women living in the city of Canberra took part in face-to-face interviews and focus groups, while study 2 involved telephone interviews with 30 women from other areas of Australia.
The affordances of search engines to locate health information and websites and social media platforms for providing information and peer support were highly used and valued. Affective forces such as the desire for trust, motivation, empowerment, reassurance, control, care, and connection emerged in the participants' accounts. Agential capacities generated with and through digital health technologies included the capacity to seek and generate information and create a better sense of knowledge and expertise about bodies, illness, and health care, including the women's own bodies and health, that of their families and friends, and that of their often anonymous online social networks. The participants referred time and again to appreciating the feelings of agency and control that using digital health technologies afforded them. When the technologies failed to work as expected, these agential capacities were not realized. Women responded with feelings of frustration, disappointment, and annoyance, leading them to become disenchanted with the possibilities of the digital technologies they had tried.
The findings demonstrate the nuanced and complex ways in which the participants were engaging with and contributing to online sources of information and using these sources together with face-to-face encounters with doctors and other health care professionals and friends and family members. They highlight the lay forms of expertise that the women had developed in finding, assessing, and creating health knowledges. The study also emphasized the key role that many women play in providing advice and health care for family members not only as digitally engaged patients but also as digitally engaged carers.
普通民众可以使用一系列数字技术来查找、分享和生成与健康相关的信息。很少有研究专门关注女性如何使用她们所能获取的各种数字技术。关注澳大利亚女性对数字健康技术使用情况的研究则更少。
澳大利亚女性与数字健康项目旨在调查女性定期用于健康相关目的的数字技术类型，以及她们认为最有帮助和最有用的技术。采用定性方法——半结构化访谈和焦点小组——来揭示参与者在使用数字健康技术时的复杂情况。该项目采用了女性主义新物质主义理论视角，关注那些共同作用以开启或关闭通过这些实践所产生的能动能力的可供性、关系连接和情感力量。
该项目包括两项独立研究，共有66名女性参与。在研究1中，36名居住在堪培拉市的女性参加了面对面访谈和焦点小组，而研究2则对来自澳大利亚其他地区的30名女性进行了电话访谈。
搜索引擎用于查找健康信息以及网站和社交媒体平台用于提供信息和同伴支持的功能被大量使用并受到重视。参与者的描述中出现了诸如对信任、动力、赋权、安心、控制、关怀和联系的渴望等情感力量。通过数字健康技术产生的能动能力包括寻求和生成信息的能力，以及对身体、疾病和医疗保健（包括女性自身的身体和健康、家人和朋友的身体和健康以及她们通常匿名的在线社交网络的身体和健康）形成更好的知识和专业感的能力。参与者多次提到欣赏使用数字健康技术所赋予她们的能动感和控制感。当这些技术未能按预期运行时，这些能动能力就无法实现。女性会产生沮丧、失望和恼怒的情绪，导致她们对自己尝试过的数字技术的可能性不再抱有幻想。
研究结果表明，参与者以细致入微且复杂的方式参与在线信息来源并为之做出贡献，同时将这些信息来源与与医生及其他医疗保健专业人员以及朋友和家人的面对面交流结合使用。这些结果突出了女性在查找、评估和创造健康知识方面所形成的外行专业形式。该研究还强调了许多女性不仅作为参与数字健康的患者，而且作为参与数字健康的照顾者，在为家庭成员提供建议和医疗保健方面所发挥的关键作用。
