Social support for people with rare diseases: Examples from the Moebius syndrome conference

Kathleen Bogart kathleen.bogart@oregonstate.edu

Abstract

Although there are about 7,000 different rare diseases, the nearly 350 million people with rare disease worldwide experience two universal themes: stigma and the need for specialized social support. Rare diseases are stigmatizing because they are isolating and lack public awareness. Adults with rare disease are at particular risk for low social support because general practitioners, who serve as gatekeepers for information and psychological referrals for common diseases, have little knowledge of rare disease. Adults with rare diseases seek support through nontraditional pathways, namely disease-specific organization websites (Aymé, Kole, & Groft, 2008). Indeed, 2/3 of rare disease patients feel they do not get sufficient informational, social, and psychological support health care system.

The speaker recently published research on the effects of a support conference for a rare disease, Moebius syndrome, a condition characterized by impaired facial and eye movement. The speaker will share insights gained from this research as well as her personal experience as a researcher who has and studies rare disease.

Adults and children with Moebius were predicted to receive different benefits from support conferences. Individuals with Moebius were predicted to receive psychosocial benefits including increased social comfort, emotional and companionship support, and reduced stigma, anxiety, and depression. Parents of people with Moebius were predicted to gain rare disease self-efficacy, including increased informational and instrumental support, knowledge about managing their child’s Moebius, and disability self-efficacy, or perceived competence in managing a disability.

47 adults with Moebius and 48 parents completed an internet-based survey four weeks prior to attending or not attending a support conference for Moebius and again six weeks after the conference. Correlational and pre-post analyses supported that adults with Moebius received social comfort benefits, reduced stigma and increased perceived knowledge from support conferences. For parents, correlations suggested that repeated conference attendance was associated with rare disease self-efficacy and perceived knowledge, but no pre-post changes were detected.

Results will be discussed in conjunction with the speaker’s qualitative research on social support for people with rare diseases. Rare disease support conferences are promising quality of life interventions for people with rare diseases and their caregivers. Importantly, being surrounded by others who share one’s condition may offer a unique opportunity for destigmatizing companionship support, which normalizes, reduces isolation, and promotes solidarity for individuals with rare disease. Future work must examine ways to provide more low-cost, accessible support avenues for people with rare diseases, such as online support groups with video conferencing and regional conferences. 
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