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The influence of Ehlers-Danlos Syndrome Hypermobility Type on motherhood: a phenomenological, hermeneutical study

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Abstract
Background: The consequences of the Ehlers-Danlos Syndrome hypermobility type (EDS-HT) affect many aspect 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 present study was to explore the lived experiences of women with EDS-HT concerning diagnosis, influence on daily life in becoming and being a mother. Method: 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. The data analysis results in six themes. (1) Getting a diagnosis is a relief; (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 strength of motherhood helps reducing the feeling of illness of the children. Conclusion: 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. Implications: Health care professionals can be of great importance to help patients in organizing their lives according to the available energy and in supporting their choices. The role of a ‘coach’ gains importance for patients with EDS-HT. This coach can either be a healthcare professional or a person from the familiar environment; who helps defining goals and setting priorities in daily life.
Keywords
Lived experiences, Ehlers-Danlos Syndrome, Motherhood, Participation, Qualitative study

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Chicago
De Baets, Stijn, Marieke Vanhalst, Marieke Coussens, Lies Rombaut, Fransiska Malfait, Geert Van Hove, Patrick Calders, Guy Vanderstraeten, and Dominique Van de Velde. 2016. “The Influence of Ehlers-Danlos Syndrome Hypermobility Type on Motherhood: a Phenomenological, Hermeneutical Study.” In COTEC-ENOTHE, Conference Abstracts.
APA
De Baets, Stijn, Vanhalst, M., Coussens, M., Rombaut, L., Malfait, F., Van Hove, G., Calders, P., et al. (2016). The influence of Ehlers-Danlos Syndrome Hypermobility Type on motherhood: a phenomenological, hermeneutical study. COTEC-ENOTHE, Conference abstracts. Presented at the 1st COTEC-ENOTHE joint congress: Connecting : education/practice/research/policy.
Vancouver
1.
De Baets S, Vanhalst M, Coussens M, Rombaut L, Malfait F, Van Hove G, et al. The influence of Ehlers-Danlos Syndrome Hypermobility Type on motherhood: a phenomenological, hermeneutical study. COTEC-ENOTHE, Conference abstracts. 2016.
MLA
De Baets, Stijn, Marieke Vanhalst, Marieke Coussens, et al. “The Influence of Ehlers-Danlos Syndrome Hypermobility Type on Motherhood: a Phenomenological, Hermeneutical Study.” COTEC-ENOTHE, Conference Abstracts. 2016. Print.
@inproceedings{8050225,
  abstract     = {Background: The consequences of the Ehlers-Danlos Syndrome hypermobility type (EDS-HT) affect many aspect of daily life. {\textquotedblleft}Living with limitations{\textacutedbl} is a central theme in the life of patients affected by this heritable disorder of connective tissue. The aim of present study was to explore the lived experiences of women with EDS-HT concerning diagnosis, influence on daily life in becoming and being a mother.
Method: 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. The data analysis results in six themes. (1) Getting a diagnosis is a relief; (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{\textquoteright}s and mothers{\textquoteright} expectations do not correspond; (5) Having a supportive social and physical environment is of major importance; (6) The strength of motherhood helps reducing the feeling of illness of the children. 
Conclusion: 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.
Implications: Health care professionals can be of great importance to help patients in organizing their lives according to the available energy and in supporting their choices. The role of a {\textquoteleft}coach{\textquoteright} gains importance for patients with EDS-HT. This coach can either be a healthcare professional or a person from the familiar environment; who helps defining goals and setting priorities in daily life.},
  author       = {De Baets, Stijn and Vanhalst, Marieke and Coussens, Marieke and Rombaut, Lies and Malfait, Fransiska and Van Hove, Geert and Calders, Patrick and Vanderstraeten, Guy and Van de Velde, Dominique},
  booktitle    = {COTEC-ENOTHE, Conference abstracts},
  keyword      = {Lived experiences,Ehlers-Danlos Syndrome,Motherhood,Participation,Qualitative study},
  language     = {eng},
  location     = {Galway, Ireland},
  title        = {The influence of Ehlers-Danlos Syndrome Hypermobility Type on motherhood: a phenomenological, hermeneutical study},
  year         = {2016},
}