title: How persons with a neuromuscular disease perceive employment participation: a qualitative study.
abstract: BACKGROUND
  A qualitative study was carried out to understand how people with a slow progressive adult type neuromuscular disease (NMD) perceive employment participation.
  
  
  METHODS
  16 paid employed persons with NMD were interviewed in open, in-depth interviews. Data were analyzed using the constant comparison method.
  
  
  RESULTS
  Four themes were identified in the analyses: (1) Experiences regarding the meaning of work; (2) Solving problems oneself; (3) Reaching a turning point; and (4) Taking into account environmental aspects. Persons with NMD highlighted benefits of staying at work as well as the tension they felt how to shape decisions to handle progressive physical hindrances in job retention. This study shows how participants at work with NMD were challenged to keep up appearances at work and at home, the tension felt around when and if to disclose, the effect of their condition on colleagues and work reorganisation challenges. Participants experienced that disclosure did not always make things better. With increasing disability participants' focus shifted from the importance of assistive products towards considerate colleague, in particular superior's willingness in supporting job retention.
  
  
  CONCLUSIONS
  Implications for health professionals might include awareness of the significant impact of changes in physical condition on employment. Timely communication and if appropriate referral to a health or occupational professional may empower employees with NMD to handle employment issues at a for themselves appropriate way. Assistive products and a supportive superior might enhance employment participation.
authors: Department of Occupation and Health, HAN University of Applied Sciences, PO Box 6960, 6503 GL, Nijmegen, The Netherlands, marieantoinette.vankuyk@han.nl.
authors: Marie-Antoinette H
authors: MA
authors: Minis
authors: Ton
authors: T
authors: Satink
authors: Astrid
authors: A
authors: Kinébanian
authors: Josephine A
authors: JA
authors: Engels
authors: Yvonne F
authors: YF
authors: Heerkens
authors: Baziel G M
authors: BG
authors: van Engelen
authors: Maria W G
authors: MW
authors: Nijhuis-van der Sanden
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000368:Aged; D006233:Persons with Disabilities / Q000523:psychology*; D030881:Disclosure; D004651:Employment / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D009468:Neuromuscular Diseases / Q000523:psychology*; D010465:Perception; D036301:Qualitative Research; D017132:Workplace / Q000523:psychology*
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