Knowledge gaps and information seeking by parents about hypospadias.
Knowledge gaps and information seeking by parents about hypospadias.
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DOI：
10.1016/j.jpurol.2020.01.008
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发表时间：
2020-04
影响因子：
2
通讯作者：
Frankel R
中科院分区：
文献类型：
--
作者：
Chan KH;Panoch J;Carroll A;Wiehe S;Cain MP;Frankel R
父母在对尿道下裂手术做出复杂的决定时，可能会感到焦虑和不确定，因为多种信息来源的可靠性值得怀疑，而且与他们所关心的问题相关性有限。本研究的目的是确定知识差距、信息寻求行为和信息需求，作为发展尿道下裂辅助决策的第一步。我们对尿道下裂患儿的英语家长（≥18岁）进行了半结构化访谈，询问他们在知识、信息寻求行为和感知信息需求方面的差距（扩展汇总表）。我们进行了访谈，直到没有确定新的主题，使用开放、轴向和选择性编码迭代分析它们。我们使用扎根的理论方法来解释尿道下裂手术的信息寻找过程。在43名符合条件的父母中，16名母亲和1名父亲（39.5%）参加了16名患者：术前7名，术后9名，远端（8名）和近端（8名）金属位置。父母年龄在21-43岁之间：15名白人和2名非裔美国人。不同研究对象的教育背景和婚姻状况各不相同。我们确定了与尿道下裂手术相关的五类知识缺口：1)流行病学，2)时机/技术，3)围手术期经验，4)长期美容效果，5)长期并发症风险。信息寻求行为包括搜索互联网，与儿童儿科医生和/或泌尿科医生讨论尿道下裂，以及从他们的社交网络中获取信息。大多数家长在咨询泌尿科医生之前或之后，从家长博客/论坛、医学院/医院网站、期刊文章和医学数据库中寻找信息。感知到的信息需求包括清晰可靠的在线信息、轻度尿道下裂的图像和尿道下裂修复病例的图像。据家长们说，其他家长的视频推荐可以帮助他们在社交网络中与他人建立联系，并建立对手术过程的信心。本研究的发现有助于我们理解父母对尿道下裂手术的决策，突出了具体的知识差距和信息需求，以纳入决策援助。研究的局限性包括样本量小，这是典型的和预期的定性研究，父亲，少数民族和同性伴侣的代表性不足。互联网是大多数家长用来解决尿道下裂知识缺口的主要信息来源。家长对信息的可靠性和清晰度表示关注，并确定了信息需求，包括家长的证词和各种尿道下裂图像，以纳入决策辅助。
Parents making complex decisions about hypospadias surgery may experience anxiety and uncertainty related to multiple sources of information with questionable reliability and limited relevance to their concerns. The purpose of this study was to identify knowledge gaps, information-seeking behaviors, and informational needs of parents making decisions about hypospadias surgery as an initial step in the development of a hypospadias decision aid. We conducted semi-structured interviews with English-speaking parents (≥18 years of age) of children with hypospadias, inquiring about gaps in their knowledge, information-seeking behaviors, and perceived informational needs (Extended Summary Table). We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. We used grounded theory methods to develop an explanation of the information-seeking process about hypospadias surgery. Of the 43 eligible parents, 16 mothers and 1 father (39.5%) of 16 patients participated: 7 preoperative and 9 postoperative with distal (8) and proximal (8) meatal locations. Parents were aged 21–43: 15 Caucasians and 2 African-Americans. Educational backgrounds and marital status varied across subjects. We identified five categories of knowledge gaps relating to hypospadias surgery: 1) epidemiology, 2) timing/technique, 3) perioperative experience, 4) long-term cosmetic outcome, and 5) long-term risk of complications. Information-seeking behaviors included searching the internet, discussing hypospadias with the child’s pediatrician and/or urologist, and obtaining information from their social network. Most parents sought information online prior to and/or after consultation with the urologist, from parent blogs/forums, medical school/hospital websites, journal articles, and medical databases. Perceived informational needs included clear and reliable information online, images of mild degrees of hypospadias, and images of repaired hypospadias cases. According to the parents, video testimonials from other parents would help them relate to others in their social network and build confidence about the surgical process. The findings of this study contribute to our understanding of parental decision-making about hypospadias surgery by highlighting specific knowledge gaps and informational needs for inclusion in a decision aid. Study limitations include a small sample size that is typical and expected for qualitative research studies and the underrepresentation of fathers, minorities, and same-sex couples. The Internet is the primary source of information most parents use to address knowledge gaps about hypospadias. Parents expressed concerns about the reliability and clarity of information and identified informational needs including parent testimonials and a wide variety of hypospadias images for inclusion in a decision aid.
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影响因子：
3.9
作者：
BURNARD, P
通讯作者：
BURNARD, P
影响因子：
1.2
作者：
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通讯作者：
Jones Rn, Jacqueline
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作者：
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通讯作者：
Trinidad, Susan Brown
影响因子：
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作者：
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通讯作者：
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影响因子：
6.6
作者：
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通讯作者：
Castagnetti, Marco