Literature DB >> 24423573

"People are all about appearances": A focus group of teenagers with Moebius Syndrome.

Kathleen R Bogart1.   

Abstract

This focus group study examined the social experiences of 10 adolescents aged 12-17 years with Moebius Syndrome, a rare condition involving congenital facial paralysis. Content analysis revealed five themes: social engagement/disengagement, resilience/sensitivity, social support/stigma, being understood/misunderstood, and public awareness/lack of awareness of Moebius Syndrome. Compared to previous research on adults with Moebius Syndrome, adolescents were more likely to experience bullying and social strain. Like adults, teenagers displayed resilience and communication skills. Greater public awareness is key to reducing the stigma associated with this condition, and social skills programs should be developed to support those who struggle with social functioning.
© The Author(s) 2014.

Entities:  

Keywords:  Moebius Syndrome; adolescence; facial paralysis; rare diseases; stigma

Mesh:

Year:  2014        PMID: 24423573     DOI: 10.1177/1359105313517277

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


  7 in total

1.  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

2.  Autonomic Responses to Emotional Stimuli in Children Affected by Facial Palsy: The Case of Moebius Syndrome.

Authors:  Ylenia Nicolini; Barbara Manini; Elisa De Stefani; Gino Coudé; Daniela Cardone; Anna Barbot; Chiara Bertolini; Cecilia Zannoni; Mauro Belluardo; Andrea Zangrandi; Bernardo Bianchi; Arcangelo Merla; Pier Francesco Ferrari
Journal:  Neural Plast       Date:  2019-04-08       Impact factor: 3.599

3.  Surgical Treatment of Clubfoot in Children with Moebius Syndrome.

Authors:  Maurizio De Pellegrin; Lorenzo Marcucci; Lorenzo Brogioni; Giovanni Prati
Journal:  Children (Basel)       Date:  2021-04-19

Review 4.  The psychosocial burden of visible disfigurement following traumatic injury.

Authors:  David B Sarwer; Laura A Siminoff; Heather M Gardiner; Jacqueline C Spitzer
Journal:  Front Psychol       Date:  2022-08-30

5.  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

6.  Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor.

Authors:  Lucie Maugest; Eavan M McGovern; Katia Mazalovic; Mohamed Doulazmi; Emmanuelle Apartis; Mathieu Anheim; Frédéric Bourdain; Eve Benchetrit; Virginie Czernecki; Emmanuel Broussolle; Cecilia Bonnet; Bruno Falissard; Marjan Jahanshahi; Marie Vidailhet; Emmanuel Roze
Journal:  Front Neurol       Date:  2018-01-15       Impact factor: 4.003

7.  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

  7 in total

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