Maintaining participation in everyday life: creativity, agency and social environment for persons with chronic disease

The program focuses on how participation can be enabled for persons with chronic disease. The overall ambition is to expand theory on participation in everyday occupations in relation to conceptualizations of creativity, agency and social environment.

Participation is presented as a goal for health care as well as a right for the individual regardless functional status. Still limited knowledge exits about how to enable participation for persons with chronic disease. Within this project we address this gap by exploring the central concepts of participation, creativity, agency and social environment. The underlying framework for this study is based on perspectives on occupation. The project involves several studies involving persons living with different conditions such as dementia, schizophrenia, cancer and stroke. Further all studies involve the social environment. The studies are performed in different cultures (Sweden, Norway, Denmark, Japan and Chile), making cross-cultural comparison possible.

Project manager


Anders Kottorp, Ph.D., Reg. OT; Ann-Britt Ivarsson., Ph.D. Reg OT; Louise Nygård PhD Reg. OT, Docent; Carol Tishelman Professor PhD, Mark Luborsky Professor PhD, Eric Asaba Ot r PhD

PhD Students: Karen la Cour, Sofia Vikström, Peter Bontje, Sissel Alsaker


The aim of this research is to contribute to theory development on how participation can be enabled for persons living in society with a chronic disease.


The methodological focus is on combining various methods including ethnographically inspired methods, narrative, test development and evaluations using existing instruments.


Grants from the Swedish Agency of Social Research, County Councils Research Programme, Arts in Hospital and Care as Culture, Association for Cancer and Traffic Victims in Sweden.


  1. Holthe, T. Thorsen, K & Josephsson S. (In Press) Occupational needs of persons with dementia in residential care an ethnographic study. Scandinavian Journal of Occupational Therapy
  2. Isaksson G., Josephsson S., Lexell J. & Skär L (In press) Take part in life again through human encounters Narratives on participation in occupation from women with spinal cord injury. Disability and Rehabilitation
  3. Josephsson, S, Asaba, E., Jonsson, H.& Alsaker S. (In Press) Creativity and order in communication; Implications from philosophy on narrative research on human occupation. Scandinavian Journal of Occupational Therapy.
  4. Le Granse, M., Kinebanian, A. & Josephsson S. (In Press) Promoting Autonomy of the Client with Persistent Mental Ilness: A Challenge for Occupational Therapists from The Netherlands, Germany and Belgium. Occupational Therapy International.
  5. Heuchemer, B. & Josephsson S. (In Press) Leaving Homelessness and Addiction: Narratives of an occupational transition. Scandinavian Journal of Occupational Therapy.
  6. La Cour, K, Josephsson, S. & Lurborsky, M (2005) Creating Connections to Life during life-threatening Illness: Creative Activity experienced by Elderly People and Occupational Therapists. Scandinavian Journal of Occupational Therapy. 12(3):98-109
  7. Vikström, S., Stigdotter-Neely A, Borell, L. & Josephsson, S. (2005) Caregivers´self-initiated support towards their partners with dementia when performing an everyday occupation together at home. OTJR; Occupation, Participation & Health. 25(4): 149-159
  8. Gahnström-Strandqvist, K., & Josephsson, S. & Tham K. (2004). Stories of Clients With Mental Illnes: The Structure of Occupational Therapists´ Interactions. OTJR; Occupation, Participation and Health. 24(4):134-143.
  9. Sköld, A., Josephsson, S. & Eliasson, A. (2004) Handling of Bimanual Activities The Experiences of Young Persons with Hemiplegic cerebral Palsy. American Journal of Occupational Therapy. 58(4):416-425.
  10. Bontje, P., Kinébanian, A., Josephsson, S & Tamura. Y. (2004) Occupational adaptation as Dealt with by Some Elderly Persons with Physical Disabilities American Journal of Occupational Therapy. 58(2):140-149.
  11. Alsaker, S. & Josephsson, S. (2003) Negotiating Occupational Identities while living with Chronic Rheumatic Disease. Scandinavian Journal of Occupational Therapy; 10, 167-176.
  12. Hvaløe, B. & Josephsson, S. (2003) Characteristics of Meaningful Occupations from Perspective of mentally Ill People. Scandinavian Journal of Occupational Therapy; 10: 61-71.
  13. Piskur. B., Kinebanian, A. & Josephsson, S. (2002) Occupation and Well- being: A Study of some Slovenian peoples Experiences of Engagement in Occupation in relation to Well-Being. Scandinavian Journal of Occupational Therapy, 8, 63-70.
  14. Jonsson, H., Josephsson, S. & Kielhofner G. (2001) Narratives and experience in an occupational transition. A longitudinal study of the retirement process. American Journal of Occupational Therapy. 55, 424-432.
  15. Ganström Strandqvist K., Tham, K., Josephsson, S & Borell L. (2000) What Constitutes feeling Competent as an occupational therapist: A Phenomenological study of practice in narrative form. Scandinavian Journal of Occupational Therapy. 7. 15-25.
  16. Jonsson, H., Josephsson, S. & Kielhofner, G. (2000) Evolving narratives in the course of retirement; a longitudinal study. American Journal of Occupational Therapy. 54, 463-470.