Literature DB >> 22257565

Social interaction experiences of adults with Moebius Syndrome: a focus group.

Kathleen R Bogart1, Linda Tickle-Degnen, Matthew S Joffe.   

Abstract

This focus group study explored the social interaction experiences and strategies of 12 adults with Moebius Syndrome, a rare congenital condition characterized by facial paralysis. Content analysis revealed five themes of social functioning: social engagement/disengagement; resilience/sensitivity; social support/stigma; being understood/misunderstood; and public awareness/lack of awareness of Moebius Syndrome. Participants used compensatory expressive strategies such as vocal tone, gestures, and humor. The combination of being unable to express oneself with the face, having a facial difference, and having a rare disease is particularly stigmatizing. Increasing public awareness and developing social skills programs for people with facial paralysis could facilitate social functioning.

Entities:  

Mesh:

Year:  2012        PMID: 22257565     DOI: 10.1177/1359105311432491

Source DB:  PubMed          Journal:  J Health Psychol        ISSN: 1359-1053


  11 in total

1.  Development and use of new therapeutics for rare diseases: views from patients, caregivers, and advocates.

Authors:  Aaron S Kesselheim; Sarah McGraw; Lauren Thompson; Kelly O'Keefe; Joshua J Gagne
Journal:  Patient       Date:  2015-02       Impact factor: 3.883

2.  Compensatory expressive behavior for facial paralysis: adaptation to congenital or acquired disability.

Authors:  Kathleen R Bogart; Linda Tickle-Degnen; Nalini Ambady
Journal:  Rehabil Psychol       Date:  2012-02

3.  Experiences and concerns of patients with recurrent attacks of acute hepatic porphyria: A qualitative study.

Authors:  Hetanshi Naik; Mikayla Stoecker; Saskia C Sanderson; Manisha Balwani; Robert J Desnick
Journal:  Mol Genet Metab       Date:  2016-08-24       Impact factor: 4.797

4.  Looking beyond the face: a training to improve perceivers' impressions of people with facial paralysis.

Authors:  Kathleen R Bogart; Linda Tickle-Degnen
Journal:  Patient Educ Couns       Date:  2014-11-06

5.  Communicating without the Face: Holistic Perception of Emotions of People with Facial Paralysis.

Authors:  Kathleen Bogart; Linda Tickle-Degnen; Nalini Ambady
Journal:  Basic Appl Soc Psych       Date:  2014-07-01

6.  Children with facial paralysis due to Moebius syndrome exhibit reduced autonomic modulation during emotion processing.

Authors:  Elisa De Stefani; Martina Ardizzi; Ylenia Nicolini; Mauro Belluardo; Anna Barbot; Chiara Bertolini; Gioacchino Garofalo; Bernardo Bianchi; Gino Coudé; Lynne Murray; Pier Francesco Ferrari
Journal:  J Neurodev Disord       Date:  2019-07-10       Impact factor: 4.025

7.  Training in Compensatory Strategies Enhances Rapport in Interactions Involving People with Möbius Syndrome.

Authors:  John Michael; Kathleen Bogart; Kristian Tylén; Joel Krueger; Morten Bech; John Rosendahl Østergaard; Riccardo Fusaroli
Journal:  Front Neurol       Date:  2015-10-08       Impact factor: 4.003

8.  Emergence and evolution of social self-management of Parkinson's disease: study protocol for a 3-year prospective cohort study.

Authors:  Linda Tickle-Degnen; Marie Saint-Hilaire; Cathi A Thomas; Barbara Habermann; Linda S Sprague Martinez; Norma Terrin; Farzad Noubary; Elena N Naumova
Journal:  BMC Neurol       Date:  2014-05-02       Impact factor: 2.474

9.  Health-related quality of life among adults with diverse rare disorders.

Authors:  Kathleen R Bogart; Veronica L Irvin
Journal:  Orphanet J Rare Dis       Date:  2017-12-07       Impact factor: 4.123

10.  Web-based sensitivity training for interacting with facial paralysis.

Authors:  Nicole Zhang; Kathleen Bogart; John Michael; Luke McEllin
Journal:  PLoS One       Date:  2022-01-21       Impact factor: 3.240

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