The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships
BackgroundPeople with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have.ObjectiveThe aim of this study is to research the impact of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectr...
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Frontiers Media S.A.
2022-04-01
|
| Series: | Frontiers in Rehabilitation Sciences |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fresc.2022.832806/full |
| _version_ | 1828080285400432640 |
|---|---|
| author | Stijn De Baets Marieke De Temmerman Patrick Calders Fransiska Malfait Geert Van Hove Guy Vanderstraeten Inge De Wandele Inge De Wandele Dominique Van de Velde |
| author_facet | Stijn De Baets Marieke De Temmerman Patrick Calders Fransiska Malfait Geert Van Hove Guy Vanderstraeten Inge De Wandele Inge De Wandele Dominique Van de Velde |
| author_sort | Stijn De Baets |
| collection | DOAJ |
| description | BackgroundPeople with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have.ObjectiveThe aim of this study is to research the impact of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) on interpersonal interactions and relationships.MethodsA phenomenological hermeneutic study was performed. Semi-structured interviews were used to explore the experiences of 11 participants.ResultsFour themes emerged from the data analysis. (1) people with hEDS or HSD can no longer do what they want to do and that affects their identity, (2) people with hEDS or HSD have to find a balance in the amount of activities they participate in, (3) having hEDS or HSD influences how to ask for, accept and give help, and (4) Relationships are affected in persons with hEDS or HSD. As well as changes in the social network, different types of relationships are influenced by the disease, including relationship with their partner, their children, their friends, strangers, fellow-sufferers and health care professionals. |
| first_indexed | 2024-04-11T03:15:43Z |
| format | Article |
| id | doaj.art-1f3366b93b0f48f9927f81fed91bb351 |
| institution | Directory Open Access Journal |
| issn | 2673-6861 |
| language | English |
| last_indexed | 2024-04-11T03:15:43Z |
| publishDate | 2022-04-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Rehabilitation Sciences |
| spelling | doaj.art-1f3366b93b0f48f9927f81fed91bb3512023-01-02T10:18:23ZengFrontiers Media S.A.Frontiers in Rehabilitation Sciences2673-68612022-04-01310.3389/fresc.2022.832806832806The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and RelationshipsStijn De Baets0Marieke De Temmerman1Patrick Calders2Fransiska Malfait3Geert Van Hove4Guy Vanderstraeten5Inge De Wandele6Inge De Wandele7Dominique Van de Velde8Occupational Therapy Research Group, Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences, Ghent University, Ghent, BelgiumOccupational Therapy Research Group, Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences, Ghent University, Ghent, BelgiumDepartment of Rehabilitation Sciences, Faculty of Medicine and Health Sciences, Ghent University, Ghent, BelgiumCentre for Medical Genetics, Ghent University Hospital, Ghent, BelgiumDepartment of Special Needs Education, Faculty of Psychology and Educational Sciences, Ghent University, Ghent, BelgiumDepartment of Physical and Rehabilitation Medicine, Ghent University Hospital, Ghent, BelgiumDepartment of Rehabilitation Sciences, Faculty of Medicine and Health Sciences, Ghent University, Ghent, BelgiumCentre for Medical Genetics, Ghent University Hospital, Ghent, BelgiumOccupational Therapy Research Group, Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences, Ghent University, Ghent, BelgiumBackgroundPeople with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have.ObjectiveThe aim of this study is to research the impact of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) on interpersonal interactions and relationships.MethodsA phenomenological hermeneutic study was performed. Semi-structured interviews were used to explore the experiences of 11 participants.ResultsFour themes emerged from the data analysis. (1) people with hEDS or HSD can no longer do what they want to do and that affects their identity, (2) people with hEDS or HSD have to find a balance in the amount of activities they participate in, (3) having hEDS or HSD influences how to ask for, accept and give help, and (4) Relationships are affected in persons with hEDS or HSD. As well as changes in the social network, different types of relationships are influenced by the disease, including relationship with their partner, their children, their friends, strangers, fellow-sufferers and health care professionals.https://www.frontiersin.org/articles/10.3389/fresc.2022.832806/fullhypermobile Ehlers-Danlos SyndromeEhlers-Danlos SyndromeHypermobility Spectrum Disorderinterpersonal interactionsparticipation |
| spellingShingle | Stijn De Baets Marieke De Temmerman Patrick Calders Fransiska Malfait Geert Van Hove Guy Vanderstraeten Inge De Wandele Inge De Wandele Dominique Van de Velde The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships Frontiers in Rehabilitation Sciences hypermobile Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome Hypermobility Spectrum Disorder interpersonal interactions participation |
| title | The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships |
| title_full | The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships |
| title_fullStr | The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships |
| title_full_unstemmed | The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships |
| title_short | The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships |
| title_sort | impact of hypermobile ehlers danlos syndrome and hypermobile spectrum disorder on interpersonal interactions and relationships |
| topic | hypermobile Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome Hypermobility Spectrum Disorder interpersonal interactions participation |
| url | https://www.frontiersin.org/articles/10.3389/fresc.2022.832806/full |
| work_keys_str_mv | AT stijndebaets theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT mariekedetemmerman theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT patrickcalders theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT fransiskamalfait theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT geertvanhove theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT guyvanderstraeten theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT ingedewandele theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT ingedewandele theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT dominiquevandevelde theimpactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT stijndebaets impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT mariekedetemmerman impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT patrickcalders impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT fransiskamalfait impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT geertvanhove impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT guyvanderstraeten impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT ingedewandele impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT ingedewandele impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships AT dominiquevandevelde impactofhypermobileehlersdanlossyndromeandhypermobilespectrumdisorderoninterpersonalinteractionsandrelationships |