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Time to update the ICF by including socioemotional qualities of participation?: The development of a ‘patient ladder of participation’ based on interview data of people with early rheumatoid arthritis (The Swedish TIRA study)
Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Activity and Health.
Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Rheumatology.
Linköping University, Department of Medical and Health Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Activity and Health.
Linköping University, Department of Social and Welfare Studies, Division of Occupational Therapy. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Rheumatology. Department of Rheumatology, Department of Social and Welfare Studies, Linköping University, Sweden.ORCID iD: 0000-0002-1607-187X
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2019 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal (Refereed) Epub ahead of print
Abstract [en]

Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.

Methods: 59 patients (age 18-63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units which were sorted based on type of situations described and later on, categories based on quality aspects of participation were developed.

Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.

Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It’s important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.

Place, publisher, year, edition, pages
Taylor & Francis, 2019.
Keywords [sv]
Critical incident technique; patient perspective; qualitative study; rheumatoid arthritis rehabilitation; social participation
National Category
Nursing
Research subject
Public Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-161572DOI: 10.1080/09638288.2018.1518494PubMedID: 30634866Scopus ID: 2-s2.0-85059905050OAI: oai:DiVA.org:liu-161572DiVA, id: diva2:1367806
Available from: 2019-11-05 Created: 2019-11-05 Last updated: 2019-11-12Bibliographically approved

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Sverker, AnnetteThyberg, IngridValtersson, EvaBjörk, MathildaÖstlund, Gunnel
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Division of Community MedicineFaculty of Medicine and Health SciencesDepartment of Activity and HealthDivision of Neuro and Inflammation ScienceDepartment of RheumatologyDepartment of Medical and Health SciencesDivision of Occupational Therapy
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