Bogart Kathleen R, Frandrup Erika, Locke Taylor, Thompson Hanna, Weber Natalie, Yates Jacqueline, Zike Nicholas, Hemmesch Amanda R
School of Psychological Science, Oregon State University, United States.
School of Psychological Science, Oregon State University, United States.
Res Dev Disabil. 2017 May;64:143-151. doi: 10.1016/j.ridd.2017.03.014. Epub 2017 Apr 10.
Moebius syndrome is a rare congenital disorder resulting in impaired facial and eye movement. People with rare diseases like Moebius syndrome experience stigma and a lack of specialized information. Support conferences may provide important forms of social support for people with rare disorders.
To examine reasons for attending, benefits, and limitations of support conferences.
50 adults with Moebius syndrome and 57 parents of people with Moebius syndrome completed open-ended items in an online study.
Mixed- methods content analysis revealed that companionship and informational support were most frequently mentioned as reasons for and benefits of attending. Finances were the most frequently mentioned reason for not attending. Parents were more likely than people with Moebius to describe instrumental support as a conference benefit. When describing conference limitations, parents were significantly more concerned by lack of information relevance, while people with Moebius noted more often that conference attributes were not relevant to their age.
Being surrounded by others who share one's condition offers a unique opportunity for destigmatizing companionship support, which normalizes, reduces isolation, and promotes solidarity. Ways to increase facilitators and decrease barriers to accessing support for rare disorders should be investigated.
梅比厄斯综合征是一种罕见的先天性疾病，会导致面部和眼部运动受损。患有梅比厄斯综合征等罕见疾病的人会遭受污名化且缺乏专业信息。支持性会议可能为患有罕见疾病的人提供重要的社会支持形式。
探讨参加支持性会议的原因、益处及局限性。
50名患有梅比厄斯综合征的成年人以及57名患有梅比厄斯综合征者的父母在一项在线研究中完成了开放式问题。
混合方法内容分析显示，陪伴和信息支持是最常被提及的参加会议的原因和益处。经济因素是最常被提及的不参加会议的原因。与患有梅比厄斯综合征的人相比，父母更有可能将实际支持描述为会议的一项益处。在描述会议局限性时，父母明显更担心信息缺乏相关性，而患有梅比厄斯综合征的人则更常指出会议内容与他们的年龄不相关。
与有相同病情的人在一起提供了一个独特的机会，可获得消除污名化的陪伴支持，这种支持能使情况正常化、减少孤立感并促进团结。应研究增加促进因素和减少获取罕见疾病支持障碍的方法。
