title: The influence of Ehlers-Danlos syndrome - hypermobility type, on motherhood: A phenomenological, hermeneutical study.
abstract: BACKGROUND
  The consequences of the Ehlers-Danlos Syndrome hypermobility type (EDS-HT) affect many aspects of daily life. "Living with limitations" is a central theme in the life of patients affected by this heritable disorder of connective tissue. The aim of the present study was to explore the lived experiences of women with EDS-HT concerning diagnosis, influence on daily life and becoming and being a mother.
  
  
  METHODS
  A phenomenological-hermeneutical study, using in-depth interviews. Patients were selected by a purposive sampling strategy.
  
  
  RESULTS
  This study shows that the EDS-HT syndrome affects daily life. Ten woman between 31 and 65 years were interviewed. They have between 2 and 5 children. The data analysis results in six themes. (1) Getting a diagnosis is a relief and supports the choice to become a mother; (2) EDS-HT causes emotional distress, imposes a physical burden and has a major impact on social behavior; (3) EDS-HT demands a restructuring of everyday activities; (4) Children's and mothers' expectations do not correspond; (5) Having a supportive social and physical environment is of major importance; (6) The presence of the child reduces the feeling of illness of the mother.
  
  
  CONCLUSIONS
  The diagnosis of EDS-HT is a catalysing factor in the choice of whether or not to become a mother. EDS-HT has a huge impact on bodily functions, which in turn influences activities and participation.
  
  
  CONCLUSIONS
  This study gives insight in the activities of daily life of persons with EDS-HT. Health care professionals can be of great importance to help patients in (re)organizing their lives according to the available energy and in supporting their choices. They can help defining goals and setting priorities in daily life.
authors.affiliation: Faculty of Medicine and Health Sciences, Department of Rehabilitation Sciences and Physiotherapy, Occupational Therapy Program. Ghent University, De Pintelaan 185, 9000 Ghent Belgium. Electronic address: stijn.debaets@ugent.be.
authors.forename: Stijn
authors.initials: S
authors.lastname: De Baets
authors.affiliation: Faculty of Medicine and Health Sciences, Department of Rehabilitation Sciences and Physiotherapy, Occupational Therapy Program. Ghent University, De Pintelaan 185, 9000 Ghent Belgium.
authors.forename: Marieke
authors.initials: M
authors.lastname: Vanhalst
authors.affiliation: Faculty of Medicine and Health Sciences, Department of Rehabilitation Sciences and Physiotherapy, Occupational Therapy Program. Ghent University, De Pintelaan 185, 9000 Ghent Belgium.
authors.forename: Marieke
authors.initials: M
authors.lastname: Coussens
authors.affiliation: Centre for Medical Genetics, University Hospital Ghent, De Pintelaan 185, 9000 Ghent, Belgium.
authors.forename: Lies
authors.initials: L
authors.lastname: Rombaut
authors.affiliation: Centre for Medical Genetics, University Hospital Ghent, De Pintelaan 185, 9000 Ghent, Belgium.
authors.forename: Fransiska
authors.initials: F
authors.lastname: Malfait
authors.affiliation: Faculty of Psychology and Educational Sciences, Department of Special Needs Education, Ghent University, Henri Dunantlaan 2, 9000 Ghent, Belgium.
authors.forename: Geert
authors.initials: G
authors.lastname: Van Hove
authors.affiliation: Faculty of Medicine and Health Sciences, Department of Rehabilitation Sciences and Physiotherapy, Occupational Therapy Program. Ghent University, De Pintelaan 185, 9000 Ghent Belgium.
authors.forename: Patrick
authors.initials: P
authors.lastname: Calders
authors.affiliation: Department of Physical and Rehabilitation Medicine, University Hospital Ghent, De Pintelaan 185, 9000 Ghent, Belgium.
authors.forename: Guy
authors.initials: G
authors.lastname: Vanderstraeten
authors.affiliation: Faculty of Medicine and Health Sciences, Department of Rehabilitation Sciences and Physiotherapy, Occupational Therapy Program. Ghent University, De Pintelaan 185, 9000 Ghent Belgium.
authors.forename: Dominique
authors.initials: D
authors.lastname: van de Velde
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D059350:Chronic Pain / Q000209:etiology / Q000503:physiopathology* / Q000523:psychology; D004535:Ehlers-Danlos Syndrome / Q000150:complications / Q000503:physiopathology* / Q000523:psychology; D005221:Fatigue / Q000209:etiology / Q000503:physiopathology* / Q000523:psychology; D005260:Female; D006801:Humans; D008875:Middle Aged; D009035:Mothers / Q000523:psychology; D036301:Qualitative Research; D012919:Social Behavior; D013315:Stress, Psychological / Q000523:psychology
keywords: Ehlers-Danlos syndrome; Lived experiences; Motherhood; Participation; Qualitative study