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Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries

Stamm, Tanja A.; Mattsson, Malin; Mihai, Carina; Stoecker, Juliane; Binder, Alexa; Bauernfeind, Bettina; Stummvoll, Georg; Gard, Gunvor LU ; Hesselstrand, Roger LU and Sandqvist, Gunnel LU , et al. (2011) In Annals of the Rheumatic Diseases 70(6). p.1074-1079
Abstract
Objective To describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective. Method A qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of 'meaning condensation' and the concepts that emerged in the analysis were linked to the ICF. Results 63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were... (More)
Objective To describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective. Method A qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of 'meaning condensation' and the concepts that emerged in the analysis were linked to the ICF. Results 63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were linked to the ICF component body functions and structures, 21 (24%) to activities and participation, 26 (30%) to environmental factors, 6 (7%) to personal factors and 1 (1%) to the health condition itself. 19 concepts (22%) were identified in all four countries and included impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits. Conclusion Concepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved. (Less)
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published
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in
Annals of the Rheumatic Diseases
volume
70
issue
6
pages
1074 - 1079
publisher
British Medical Association
external identifiers
  • wos:000290149900031
  • scopus:79955795750
ISSN
1468-2060
DOI
10.1136/ard.2010.148767
language
English
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yes
id
9094fd07-6cc4-477f-9c48-3414bf5c72f7 (old id 1988107)
date added to LUP
2011-07-01 09:29:25
date last changed
2017-11-05 04:09:15
@article{9094fd07-6cc4-477f-9c48-3414bf5c72f7,
  abstract     = {Objective To describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective. Method A qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of 'meaning condensation' and the concepts that emerged in the analysis were linked to the ICF. Results 63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were linked to the ICF component body functions and structures, 21 (24%) to activities and participation, 26 (30%) to environmental factors, 6 (7%) to personal factors and 1 (1%) to the health condition itself. 19 concepts (22%) were identified in all four countries and included impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits. Conclusion Concepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved.},
  author       = {Stamm, Tanja A. and Mattsson, Malin and Mihai, Carina and Stoecker, Juliane and Binder, Alexa and Bauernfeind, Bettina and Stummvoll, Georg and Gard, Gunvor and Hesselstrand, Roger and Sandqvist, Gunnel and Draghicescu, Oana and Gherghe, Ana Maria and Voicu, Malina and Machold, Klaus P. and Distler, Oliver and Smolen, Josef S. and Bostrom, Carina},
  issn         = {1468-2060},
  language     = {eng},
  number       = {6},
  pages        = {1074--1079},
  publisher    = {British Medical Association},
  series       = {Annals of the Rheumatic Diseases},
  title        = {Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries},
  url          = {http://dx.doi.org/10.1136/ard.2010.148767},
  volume       = {70},
  year         = {2011},
}