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

Stijn De Baets UGent, Marieke Vanhalst, Marieke Coussens UGent, Lies Rombaut UGent, Fransiska Malfait UGent, Geert Van Hove UGent, Patrick Calders UGent, Guy Vanderstraeten UGent and Dominique Van de Velde UGent (2016) COTEC-ENOTHE, Conference abstracts.
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.
Please use this url to cite or link to this publication:
author
organization
year
type
conference
publication status
published
subject
keyword
Lived experiences, Ehlers-Danlos Syndrome, Motherhood, Participation, Qualitative study
in
COTEC-ENOTHE, Conference abstracts
conference name
1st COTEC-ENOTHE joint congress: Connecting : education/practice/research/policy
conference location
Galway, Ireland
conference start
2016-06-15
conference end
2016-06-19
language
English
UGent publication?
yes
classification
C3
additional info
poster presentation
id
8050225
handle
http://hdl.handle.net/1854/LU-8050225
date created
2016-08-17 15:25:30
date last changed
2016-12-19 15:37:20
@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},
}

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.