Gene/Protein Disease Symptom Drug Enzyme Compound
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Query: UMLS:C0277787 (stigma)
 13,352 document(s) hit in 31,850,051 MEDLINE articles (0.00 seconds)

People affected by rare diseases often have limited coping resources and sometimes face stigma. They build communities with others who share their conditions, but not all members may benefit from these communities. This study investigated how adults with a rare genetic health condition (Alpha-1 antitrypsin deficiency; AATD) think about both the Alpha-1 community and public stigma about AATD, and how these cognitions were associated with their communication responses and well-being. The results showed that people with AATD encountered stigmatization from various sources, including family, employers, healthcare providers, and insurance companies. Stronger public stigma predicted more secrecy, more stress, and less available support. Stronger group identification with the Alpha-1 community predicted less secrecy; stronger group activism predicted more available support and more communication to challenge stigmatizers. Post-hoc analyses showed significant interactions between public stigma and group cognitions on communication to challenge stigmatizers. Practical implications for bolstering communities to improve the well-being of people with rare diseases were discussed.
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PMID:Living with a Rare Health Condition: The Influence of a Support Community and Public Stigma on Communication, Stress, and Available Support. 2939 34

This study used the stress buffering perspective to identify social resources, including social network support, having a high quality marriage, and spousal support, that protect against deleterious effects of the progression of Alpha-1 antitrypsin deficiency (AATD) on quality of life. Participants included 130 married adults living with AATD. We measured participants' quality of life in three ways: perceived stress, life satisfaction, and perceptions of social stigma. The results suggested that disease progression corresponded positively with perceived stress and negatively with life satisfaction. Social network support moderated the association between disease progression and perceived stress and social stigma, and spousal support moderated the association between disease progression and perceived stress and life satisfaction. Marital quality was not a significant moderator. The discussion highlights the stress buffering effects of social support from close others.
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PMID:A Stress Buffering Perspective on the Progression of Alpha-1 Antitrypsin Deficiency. 3084 37