Department of Family Medicine, Heritage College of Osteopathic Medicine, Ohio University.
Department of Communication, College of Liberal Arts and Sciences, University of Illinois Urbana Champaign.
Health Commun. 2020 May;35(6):685-695. doi: 10.1080/10410236.2019.1582314. Epub 2019 Feb 22.
Parents of children with visible illnesses and physical differences, such as vascular birthmarks (VBs), often fear that their child will be stigmatized by others. Despite their use of various strategies to minimize this stigma, parents still frequently receive comments and questions from others about their child's condition. In the current study, we explore the source, content, and valence of these messages using a memorable messages framework. We also examine how parents react to messages from others and why those messages are considered memorable. To collect data, we administered a cross-sectional online survey through the website and social media pages of a national support group for parents of children with vascular birthmarks. A total of 70 parents completed the survey and, altogether, recalled 92 memorable messages. Our analyses revealed that the significance of the memorable messages coalesced around identity. Specifically, the messages described carried implications for a) participants in terms of their identities as parents, and b) participants' children in terms of their identities as stigmatized individuals. When messages were directed at parents, parents appraised them negatively or positively to the extent that they made parents feel judged or validated as parents of children with VBs. When messages were directed at children, parents appraised them negatively or positively to the extent that they labeled children and their VB as abnormal, unattractive, and undesirable, or accepted and complimented children as unique, special, and beautiful. The current research extends previous research exploring the role of memorable messages in negotiating identity.
患有可见疾病和身体差异（如血管性胎记）的儿童的父母通常担心他们的孩子会被他人歧视。尽管他们使用了各种策略来尽量减少这种耻辱感，但父母仍然经常收到他人对孩子病情的评论和询问。在本研究中，我们使用一个令人难忘的信息框架来探讨这些信息的来源、内容和情感色彩。我们还研究了父母对他人信息的反应以及为什么这些信息被认为是令人难忘的。为了收集数据，我们通过一个全国性的血管性胎记患儿父母支持组织的网站和社交媒体页面进行了一项横断面在线调查。共有 70 名父母完成了调查，总共回忆了 92 条令人难忘的信息。我们的分析表明，这些令人难忘的信息的重要性集中在身份认同上。具体来说，这些信息描述了参与者作为父母的身份，以及他们的孩子作为被污名化个体的身份所涉及的问题。当信息是针对父母的时，父母会根据这些信息对他们作为 VB 患儿父母的被评判或被认可的程度进行负面或正面的评价。当信息是针对孩子的时，父母会根据这些信息对孩子及其 VB 被标记为异常、不吸引人、不受欢迎，或被接受和赞扬为独特、特别和美丽的程度进行负面或正面的评价。本研究扩展了先前探索在协商身份认同中令人难忘的信息的作用的研究。
