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)

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: Fifty-nine patients (age 18-63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units that were sorted based on the 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 is important to expand participation beyond the definitions in ICF and guidelines to include the patients' socio-emotional participation in order to promote health. Implications for rehabilitation Facilitation of participation in daily activities is an important part of rehabilitation. Participation is expressed as determined by a person's unique life circumstances often in engagement with others. It is important to expand participation beyond the definitions in ICF and guidelines to include the patients' socio-emotional participation in order to promote health. Collected information about socioemotional participation can serve as a starting point for interventions aimed at the patient's social environment and also provide support for health professions how to involve significant others in the rehabilitation.