ABSTRACT

Parents of children with special healthcare needs search the Internet to learn about and share health-related information. Indeed, online communities (OCs) often increase knowledge and skills, decreasing feelings of isolation and distress. The current study explored the content and functioning of an Italian OC comprising parents of children with Down Syndrome. Following a netnographic method, data were analysed through the Latent Thematic Analysis. Five main themes emerged: the e-group, the child, prescriptive knowhow, being a parent, and personal experience across time. The findings illustrated the complex relationship between parents and children with Down Syndrome within the OC, exploring psychological themes recurring in parents of children with Down Syndrome. Within the e-group, special children and parental challenges can be described, sharing concerns, conflicting emotions, and experience-based information, countering Down Syndrome difficulties and social isolation. Clinicians and healthcare professionals should consider the OCs-related advantages to enhance the healthcare of parents and children with Down Syndrome.

摘要

有特殊医疗保健需求的儿童的父母在互联网上搜索以了解和分享与健康相关的信息。事实上，在线社区 (OC) 通常会增加知识和技能，减少孤立感和痛苦感。目前的研究探讨了由唐氏综合症儿童的父母组成的意大利 OC 的内容和功能。按照网络图法，通过潜在主题分析对数据进行分析。出现了五个主要主题：电子群体、孩子、规范性知识、为人父母和跨时间的个人体验。研究结果说明了 OC 内患有唐氏综合症的父母和孩子之间的复杂关系，探索了在患有唐氏综合症的孩子的父母中反复出现的心理主题。在 e-group 中，可以描述特殊的孩子和父母的挑战，分享担忧、冲突的情绪和基于经验的信息，对抗唐氏综合症的困难和社会孤立。临床医生和医疗保健专业人员应考虑 OCs 的相关优势，以增强唐氏综合症父母和儿童的医疗保健。