TY - JOUR
T1 - The Impact of Hypermobile “Ehlers-Danlos Syndrome” and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships
AU - De Baets, Stijn
AU - De Temmerman, Marieke
AU - Calders, Patrick
AU - Malfait, Fransiska
AU - Van Hove, Geert
AU - Vanderstraeten, Guy
AU - De Wandele, Inge
AU - Van de Velde, Dominique
N1 - Copyright © 2022 De Baets, De Temmerman, Calders, Malfait, Van Hove, Vanderstraeten, De Wandele and Van de Velde.
PY - 2022/4/11
Y1 - 2022/4/11
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85174020511&partnerID=8YFLogxK
U2 - 10.3389/fresc.2022.832806
DO - 10.3389/fresc.2022.832806
M3 - Article
C2 - 36188999
VL - 3
SP - 1
EP - 9
JO - Frontiers in rehabilitation sciences
JF - Frontiers in rehabilitation sciences
SN - 2673-6861
M1 - 832806
ER -