1. The influence of Ehlers-Danlos syndrome – hypermobility type, on motherhood: A phenomenological, hermeneutical study
- Author
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Fransiska Malfait, Lies Rombaut, Marieke Coussens, Guy Vanderstraeten, Marieke Vanhalst, Stijn De Baets, Patrick Calders, Dominique Van de Velde, and Geert Van Hove
- Subjects
Adult ,Joint hypermobility ,Activities of daily living ,media_common.quotation_subject ,Mothers ,Affect (psychology) ,Developmental psychology ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,Activities of Daily Living ,Health care ,Developmental and Educational Psychology ,medicine ,Humans ,030212 general & internal medicine ,Social Behavior ,Fatigue ,Qualitative Research ,Hypermobility (travel) ,Aged ,media_common ,030203 arthritis & rheumatology ,business.industry ,Middle Aged ,medicine.disease ,Clinical Psychology ,Feeling ,Ehlers-Danlos Syndrome ,Female ,Chronic Pain ,Psychology ,business ,Stress, Psychological ,Qualitative research - 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. 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. 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. 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 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.
- Published
- 2017
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