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Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome".
Disabil Rehabil 2019; :1-10DR

Abstract

Background:

"Ehlers-Danlos syndrome" (EDS) is a heritable connective disorder influencing multiple aspects of daily life. Most studies have focused on describing the physical symptoms and level of disability, but little knowledge exists about the psychosocial effects of the pathology. Participation in employment is an aspect that strongly influences quality of life of patients with chronic pathologies. This study, therefore, aimed to explore the lived experiences in employment participation of patients diagnosed with "hypermobile EDS".

Methods:

An inductive thematic analysis, using semi-structured interviews was used. Nine patients, purposively selected by a continuum sampling strategy, were included. Interviews were audio-recorded and transcribed verbatim.

Results:

Data analysis resulted in three main themes: (1) elements assisting participation in employment, (2) limitations in employment participation, and (3) unemployment due to the "hypermobile EDS". On the one hand, the results show that related health complaints can impede employment participation to an important extent. On the other hand, patients also report several aspects of work that can affect their well-being in a positive way.

Conclusion:

There are specific reasons for a person with "hypermobile EDS" to participate in employment. These reasons are different for each person and may even vary in time. Implications for rehabilitation "Hypermobile EDS" greatly impacts activities and participation in daily life. "Living with limitations" is the central theme in the lives of "Hypermobile EDS" patients. Various aspects influence work participation in people with "Hypermobile EDS", such as work pressure, tasks, and transport to work. Work has positive effects in the lives of people with "Hypermobile EDS." Work can create difficulties when the job requirements and tasks do not match the functional abilities of a person with "Hypermobile EDS."

Authors+Show Affiliations

a Occupational Therapy Program, Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences , Ghent University , Ghent , Belgium.b Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences , Ghent University , Ghent , Belgium.a Occupational Therapy Program, Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences , Ghent University , Ghent , Belgium.a Occupational Therapy Program, Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences , Ghent University , Ghent , Belgium.c Centre for Medical Genetics , Ghent University Hospital , Ghent , Belgium.c Centre for Medical Genetics , Ghent University Hospital , Ghent , Belgium.b Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences , Ghent University , Ghent , Belgium. d Department of Physical and Rehabilitation Medicine , Ghent University Hospital , Ghent , Belgium.e Department of Special Needs Education, Faculty of Psychology and Educational Sciences , Ghent University , Ghent , Belgium.a Occupational Therapy Program, Department of Rehabilitation Sciences, Faculty of Medicine and Health Sciences , Ghent University , Ghent , Belgium.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31287330

Citation

De Baets, Stijn, et al. "Patient Perspectives On Employment Participation in the "hypermobile Ehlers-Danlos Syndrome"." Disability and Rehabilitation, 2019, pp. 1-10.
De Baets S, Calders P, Verhoost L, et al. Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome". Disabil Rehabil. 2019.
De Baets, S., Calders, P., Verhoost, L., Coussens, M., Dewandele, I., Malfait, F., ... Van de Velde, D. (2019). Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome". Disability and Rehabilitation, pp. 1-10. doi:10.1080/09638288.2019.1636316.
De Baets S, et al. Patient Perspectives On Employment Participation in the "hypermobile Ehlers-Danlos Syndrome". Disabil Rehabil. 2019 Jul 9;1-10. PubMed PMID: 31287330.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Patient perspectives on employment participation in the "hypermobile Ehlers-Danlos syndrome". AU - De Baets,Stijn, AU - Calders,Patrick, AU - Verhoost,Liesbeth, AU - Coussens,Marieke, AU - Dewandele,Inge, AU - Malfait,Fransiska, AU - Vanderstraeten,Guy, AU - Van Hove,Geert, AU - Van de Velde,Dominique, Y1 - 2019/07/09/ PY - 2019/7/10/entrez KW - Disability KW - EhlersDanlos Syndrome type 3 KW - EhlersDanlos syndrome KW - International Classification of Functioning KW - Qualitative research KW - Work KW - and Health KW - social participation SP - 1 EP - 10 JF - Disability and rehabilitation JO - Disabil Rehabil N2 - Background: "Ehlers-Danlos syndrome" (EDS) is a heritable connective disorder influencing multiple aspects of daily life. Most studies have focused on describing the physical symptoms and level of disability, but little knowledge exists about the psychosocial effects of the pathology. Participation in employment is an aspect that strongly influences quality of life of patients with chronic pathologies. This study, therefore, aimed to explore the lived experiences in employment participation of patients diagnosed with "hypermobile EDS". Methods: An inductive thematic analysis, using semi-structured interviews was used. Nine patients, purposively selected by a continuum sampling strategy, were included. Interviews were audio-recorded and transcribed verbatim. Results: Data analysis resulted in three main themes: (1) elements assisting participation in employment, (2) limitations in employment participation, and (3) unemployment due to the "hypermobile EDS". On the one hand, the results show that related health complaints can impede employment participation to an important extent. On the other hand, patients also report several aspects of work that can affect their well-being in a positive way. Conclusion: There are specific reasons for a person with "hypermobile EDS" to participate in employment. These reasons are different for each person and may even vary in time. Implications for rehabilitation "Hypermobile EDS" greatly impacts activities and participation in daily life. "Living with limitations" is the central theme in the lives of "Hypermobile EDS" patients. Various aspects influence work participation in people with "Hypermobile EDS", such as work pressure, tasks, and transport to work. Work has positive effects in the lives of people with "Hypermobile EDS." Work can create difficulties when the job requirements and tasks do not match the functional abilities of a person with "Hypermobile EDS." SN - 1464-5165 UR - https://www.unboundmedicine.com/medline/citation/31287330/Patient_perspectives_on_employment_participation_in_the_"hypermobile_Ehlers_Danlos_syndrome"_ L2 - http://www.tandfonline.com/doi/abs/10.1080/09638288.2019.1636316 DB - PRIME DP - Unbound Medicine ER -