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

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Organization
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 International Society of Physical and Rehabilitation Medicine, 10th World Congress, 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. International Society of Physical and Rehabilitation Medicine, 10th World congress, Abstracts. Presented at the 10th International Society of Physical and Rehabilitation Medicine world congress (ISPRM 2016).
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. International Society of Physical and Rehabilitation Medicine, 10th World congress, 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.” International Society of Physical and Rehabilitation Medicine, 10th World Congress, Abstracts. 2016. Print.
@inproceedings{8050208,
  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    = {International Society of Physical and Rehabilitation Medicine, 10th World congress, Abstracts},
  keyword      = {Lived experiences,Ehlers-Danlos Syndrome,Motherhood,Participation,Qualitative study},
  language     = {eng},
  location     = {Kuala Lumpur, Malaysia},
  title        = {The influence of Ehlers-Danlos Syndrome Hypermobility Type on motherhood: a phenomenological, hermeneutical study},
  year         = {2016},
}