The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships
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Background: People with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have. Objective: The 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. Methods: A phenomenological hermeneutic study was performed. Semi-structured interviews were used to explore the experiences of 11 participants. Results: Four 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.
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Patients with HSD/hEDS in a phenomenological hermeneutic study reported changes in their social network and that various types of relationships were influenced by their disease.
“These patients reported change in their social network and that various type of relationships were influenced by their disease.[57]”
From Hypermobility spectrum disorders: A review (2023) · cites this paper as [57]
A phenomenological hermeneutic study of eleven patients with HSD/hEDS found that relationships among HSD/hEDS patients are adversely affected.
“Eleven patients with HSD/hEDS interviewed as part of a phenomenological hermeneutic study revealed that relationships among HSD/hEDS patients are adversely affected.[57]”
From Hypermobility spectrum disorders: A review (2023) · cites this paper as [57]
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References 33 · Cited by 6
Research works printed but not linked: 2
- [30]Gadamer HG Weinsheimer J Marshall DG. EPZ Truth and Method. London: Bloomsbury Publishing USA (2004).
- [34]Nayar S Stanley M. Qualitative Research Methodologies for Occupational Science and Therapy. Vol. Subscription and Registration Required for Access. Abingdon, Oxon: Routledge (2015).
- Authors
- De Baets, S., De Temmerman, M., Calders, P., Malfait, F., Van Hove, G., Vanderstraeten, G., De Wandele, I., & Van de Velde, D.
- Affiliations
- Ghent University (BE)
- Ghent University Hospital (BE)
- Venue
- Frontiers in Rehabilitation Sciences
- Publisher
- Frontiers Media SA
- Published
- 2022-04-11
- Volume
- 3
- Pages
- 832806-832806
- ISSN
- 2673-6861 (ISSN-L)
- PMC
- PMC9397711
- OpenAlex
- W4223514078
- Cited by
- 6
- References
- 33
- Citations by year
- 2025: 3 · 2024: 2 · 2023: 1
- FWCI
- 0.91
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Frontiers in Rehabilitation Sciences (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Lirias (acceptedVersion, cc-by)
- Ghent University Academic Bibliography (Ghent University) (submittedVersion, cc-by)
- VUBIR (Vrije Universiteit Brussel) (submittedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Social Sciences › Psychology › Social Psychology › Attachment and Relationship Dynamics
- Keywords
- hypermobile Ehlers-Danlos syndrome, interpersonal relationships, social participation (health and rehabilitation), help-seeking, identity, social networks, patient experience, couple relationships, peer support
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