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Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome”

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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.
Keywords
Qualitative research, Work, International Classification of Functioning, Disability, and Health, social participation, Ehlers-Danlos Syndrome type 3, Ehlers-Danlos syndrome, QUALITY-OF-LIFE, JOINT HYPERMOBILITY, WORK PARTICIPATION, SELF-MANAGEMENT, CHRONIC DISEASE, CHRONIC PAIN, MECHANISMS, DISABILITY, PRINCIPLES, DIAGNOSIS

Citation

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MLA
De Baets, Stijn, et al. “Patient Perspectives on Employment Participation in the ‘Hypermobile Ehlers–Danlos Syndrome.’” DISABILITY AND REHABILITATION, 2020.
APA
De Baets, S., Calders, P., Verhoost, L., Coussens, M., De Wandele, I., Malfait, F., … Van de Velde, D. (2020). Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome.” DISABILITY AND REHABILITATION.
Chicago author-date
De Baets, Stijn, Patrick Calders, Liesbeth Verhoost, Marieke Coussens, Inge De Wandele, Fransiska Malfait, Guy Vanderstraeten, Geert Van Hove, and Dominique Van de Velde. 2020. “Patient Perspectives on Employment Participation in the ‘Hypermobile Ehlers–Danlos Syndrome.’” DISABILITY AND REHABILITATION.
Chicago author-date (all authors)
De Baets, Stijn, Patrick Calders, Liesbeth Verhoost, Marieke Coussens, Inge De Wandele, Fransiska Malfait, Guy Vanderstraeten, Geert Van Hove, and Dominique Van de Velde. 2020. “Patient Perspectives on Employment Participation in the ‘Hypermobile Ehlers–Danlos Syndrome.’” DISABILITY AND REHABILITATION.
Vancouver
1.
De Baets S, Calders P, Verhoost L, Coussens M, De Wandele I, Malfait F, et al. Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome.” DISABILITY AND REHABILITATION. 2020;
IEEE
[1]
S. De Baets et al., “Patient perspectives on employment participation in the ‘hypermobile Ehlers–Danlos syndrome,’” DISABILITY AND REHABILITATION, 2020.
@article{8631850,
  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.},
  author       = {De Baets, Stijn and Calders, Patrick and Verhoost, Liesbeth and Coussens, Marieke and De Wandele, Inge and Malfait, Fransiska and Vanderstraeten, Guy and Van Hove, Geert and Van de Velde, Dominique},
  issn         = {0963-8288},
  journal      = {DISABILITY AND REHABILITATION},
  keywords     = {Qualitative research,Work,International Classification of Functioning,Disability,and Health,social participation,Ehlers-Danlos Syndrome type 3,Ehlers-Danlos syndrome,QUALITY-OF-LIFE,JOINT HYPERMOBILITY,WORK PARTICIPATION,SELF-MANAGEMENT,CHRONIC DISEASE,CHRONIC PAIN,MECHANISMS,DISABILITY,PRINCIPLES,DIAGNOSIS},
  language     = {eng},
  title        = {Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome”},
  url          = {http://dx.doi.org/10.1080/09638288.2019.1636316},
  year         = {2020},
}

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