“Rare place where I feel normal”: Perceptions of a social support conference among parents of and people with Moebius syndrome

摘要

Highlights ? Rare disorders like Moebius syndrome involve stigma and lack social support. ? Reasons for attending, benefits, and limitations of support conferences were studied. ? Companionship was the most important benefit and reason for attending conferences. ? Finances were the most common reason for not attending. ? Ways to improve access to support for rare disorders should be investigated. Abstract Background 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. Aims To examine reasons for attending, benefits, and limitations of support conferences. Methods and procedures 50 adults with Moebius syndrome and 57 parents of people with Moebius syndrome completed open-ended items in an online study. Outcomes and results 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. Conclusions and implications 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. ]]>