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The individual experience of functioning and disability in Switzerland - patient perspective and person-centeredness in spinal cord injury

The individual experience of functioning and disability in Switzerland - patient perspective and person-centeredness in spinal cord injury
The individual experience of functioning and disability in Switzerland - patient perspective and person-centeredness in spinal cord injury
Study design. Qualitative, multi-center study.

Objectives. The objective of this study is to explore the aspects of functioning and disability that are relevant to individuals with spinal cord injury (SCI), using a comprehensive approach based on the International Classification of Functioning, Disability and Health (ICF).

Methods. Forty-nine people with SCI from early post-acute and long-term rehabilitation settings participated in nine focus groups. Five open-ended questions based on the ICF were used to initiate discussion about relevant Body Functions and Structures, Activities and Participation, Environmental and Personal Factors. The focus groups were audiotaped and the recording was transcribed verbatim. Qualitative analyses included the identification, extraction and coding of meaningful concepts from the transcribed dialogue. Concepts were coded according to established rules using ICF categories and were summarized semi-quantitatively.

Results. In the analysis, 1582 different concepts were identified. For coding one concept, an average of 1.4 ICF categories was used. This resulted in 2235 concept-ICF category links, 1068 in the early post-acute and 1167 in the long-term context, respectively. For the coding, 274 out of the 1454 categories contained in the ICF were used.

Conclusion. The ICF coding showed the broad range of relevant aspects in the functioning experience of persons with SCI. Besides body limitations (especially paralysis and pain), the most relevant concepts covered mainly barriers in physical environment, assistive devices and social support, as well as the impact on everyday life regarding leisure and work. The resulting list of ICF categories can be helpful in facilitating person-centered clinical care and research.
1362-4393
1173-1181
Lüthi, H.
6aff7d42-bd27-4de2-9ee5-2f0d0861b2d3
Geyh, S.
dc073a71-f2cc-40af-94a5-dd520b858e5b
Baumberger, M.E.
967587db-234d-4e45-9c2a-caa67db0403e
Dokladal, P.
238f6eb6-cbc2-4098-867c-14bedb9392dd
Scheuringer, M.
7ce23ebc-ec08-4278-a3bc-3cc0caad2f88
Mäder, M.
f0ef13cc-585f-4de6-a3e8-25695fef0cb9
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Lüthi, H.
6aff7d42-bd27-4de2-9ee5-2f0d0861b2d3
Geyh, S.
dc073a71-f2cc-40af-94a5-dd520b858e5b
Baumberger, M.E.
967587db-234d-4e45-9c2a-caa67db0403e
Dokladal, P.
238f6eb6-cbc2-4098-867c-14bedb9392dd
Scheuringer, M.
7ce23ebc-ec08-4278-a3bc-3cc0caad2f88
Mäder, M.
f0ef13cc-585f-4de6-a3e8-25695fef0cb9
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e

Lüthi, H., Geyh, S., Baumberger, M.E., Dokladal, P., Scheuringer, M., Mäder, M. and Cieza, Alarcos (2011) The individual experience of functioning and disability in Switzerland - patient perspective and person-centeredness in spinal cord injury. Spinal Cord, 49 (12), 1173-1181. (doi:10.1038/sc.2011.76). (PMID:21788953)

Record type: Article

Abstract

Study design. Qualitative, multi-center study.

Objectives. The objective of this study is to explore the aspects of functioning and disability that are relevant to individuals with spinal cord injury (SCI), using a comprehensive approach based on the International Classification of Functioning, Disability and Health (ICF).

Methods. Forty-nine people with SCI from early post-acute and long-term rehabilitation settings participated in nine focus groups. Five open-ended questions based on the ICF were used to initiate discussion about relevant Body Functions and Structures, Activities and Participation, Environmental and Personal Factors. The focus groups were audiotaped and the recording was transcribed verbatim. Qualitative analyses included the identification, extraction and coding of meaningful concepts from the transcribed dialogue. Concepts were coded according to established rules using ICF categories and were summarized semi-quantitatively.

Results. In the analysis, 1582 different concepts were identified. For coding one concept, an average of 1.4 ICF categories was used. This resulted in 2235 concept-ICF category links, 1068 in the early post-acute and 1167 in the long-term context, respectively. For the coding, 274 out of the 1454 categories contained in the ICF were used.

Conclusion. The ICF coding showed the broad range of relevant aspects in the functioning experience of persons with SCI. Besides body limitations (especially paralysis and pain), the most relevant concepts covered mainly barriers in physical environment, assistive devices and social support, as well as the impact on everyday life regarding leisure and work. The resulting list of ICF categories can be helpful in facilitating person-centered clinical care and research.

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Published date: December 2011
Organisations: Psychology

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Local EPrints ID: 341186
URI: http://eprints.soton.ac.uk/id/eprint/341186
ISSN: 1362-4393
PURE UUID: 58eaf790-4427-46f8-9689-af84c09a223c

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Date deposited: 17 Jul 2012 11:00
Last modified: 14 Mar 2024 11:36

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Contributors

Author: H. Lüthi
Author: S. Geyh
Author: M.E. Baumberger
Author: P. Dokladal
Author: M. Scheuringer
Author: M. Mäder
Author: Alarcos Cieza

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