Open Access Open Access  Restricted Access Subscription Access

Use of participatory design in the development of person-centred web-based support for persons with long-term illness

Carina Sparud-Lundin, Ulrika Josefsson, Marie Berg, Anna-Lena Hellstrom, Ingalill Koinberg, Margaretha Jenholt Nolbris, Agneta Ranerup, Ingela Skarsater


Background: E-health solutions are increasingly being developed to meet patients’ preferences and promote their participation in healthcare. Few studies have explored the participatory design process from the perspective of person-centeredness, including how it becomes materialized in technology. This paper explores how applied participatory approaches and the design of 4 web-based interventions directed towards long-term illness correspond to key areas of person-centeredness. 

Methods: Data were collected during 2009 to 2012, from 4 Swedish research projects. The analysis followed an inductive approach involving a step-wise cross-case analysis. The purpose was to create shared knowledge and understanding of each separate case and to generate relevant categories.

Results: A number of question areas describe the dialogue with the case participants. Results of the dialogue are categorized into 4 support areas: psychological/emotional, personal, information and technical. Person-centeredness becomes visible in the participatory design process as the approach promotes the development of a holistic view of the person and the illness and a partnership between patients and carers. The use of communication technology exemplifies concrete materialization of person-centeredness in the design of the web-based supports. The purpose of the web supports and the shaping of the actual use of the functionalities are more abstract forms of materialization.

Conclusions: Our results contribute to a central development area within eHealth involving increased opportunities for patients to contribute actively in real time, obtaining access to information and sometimes interacting with carers. However, neither participatory approaches nor technology for online information and communication, can guarantee person-centeredness in isolation.


Communication technology, cross-care analysis, design process, e-Health, long-term illness, participatory design, patient empowerment, person-centred care, shared decision-making, therapeutic alliance, web based support

Full Text:



Hesse, B.W. & Shneiderman, B. (2007). eHealth research from the user’s perspective. American Journal of Preventive Medicine 32, 97-103.

Kreps, G.L. & Neuhauser, L. (2010). New directions in eHealth communication: opportunities and challenges. Patient Education and Counseling 78, 329-336.

Ekberg, J., Ericson, L., Timpka, T., Eriksson, H., Nordfelt, S., Hanberger, L. & Ludvigsson, J. (2010). Web 2.0 systems supporting childhood chronic disease management. Designing guidelines based on information behaviour and social learning theories. Journal of Medical Systems 34, 107-117.

Elwyn, G., Kreuwel, I., Durand, A-M., Sivell, S., Joseph-Williams, N., Evans, R. & Edwards, A. (2011). How to develop web-based decision support interventions for patients: a process map. Patient Education and Counseling 82, 260-265.

Elf, M., Krevers, B. & Skärsäter. I. (2011).‘The web is not enough, it’s a base’- an explorative study of what needs a web-based support system for young carers must meet. Informatics for Health & Social Care 36 (4) 206-219.

Sparud-Lundin, C., Ranerup, A. & Berg, M. (2011). Internet use, needs and expectations of web-based information and communication in childbearing women with type 1 diabetes. BMC Medical Informatics & Decision Making 11, 49.

Nijland, N., van Gemert-Pijnen, J.E.W.C., Kelders, S.M., Brandenburg, B. & Seydel, E.R. (2011). Factors influencing the use of a web-based application for supporting the self-care of patients with type 2 diabetes: A longitudinal study. Journal of Medical Internet Research 13 (3) e71.

Moen, A., Smørdal, O. & Sem, I. (2009). Web-based resources for peer support – opportunities and challenges. Studies in Health Technology and Informatics 150, 302-306.

Skeels, M.M., Unruh, K.T., Powell, C. & Pratt, W. (2010). Catalyzing Social support for Breast Cancer Patients. CHI Conference Proceeding 173-182.

Reis, C.I., Freire, C.S., Fernández, J. & Monguet, J.M. (2011). Patient Centred Design: Challenges and Lessons Learned from Working with Health Professionals and Schizophrenic Patients in e-Therapy Contexts. ENTERprise Information Systems Communications in Computer and Information Science 221, 1-10.

Ekman, I., Swedberg, K., Taft, C., Lindseth, A., Norberg, A., Brink, E., Carlsson, J., Dahlin-Ivanoff, S., Johansson, I.L., Kjellgren, K., Lidén, E., Öhlen, J., Olsson, L.E., Rosén, H., Rydmark, M. & Sunnerhagen, K.S. (2011). Person-centred care - Ready for prime time. European Journal of Cardiovascular Nursing 10, 248-251.

Sullivan, M. (2003). The new subjective medicine: taking the patient’s point of view on health care and health. Social Science & Medicine 56, 1595-1694.

Loader, B., Hardey, M. & Keeble, L. (2008). Health informatics for older people: a review of ICT facilitated integrated care for older people. International Journal of Social Welfare 17 (1) 46-53.

Gregory, J. (2003). Scandinavian Approaches to Participatory Design. Journal of Engineering Education 19 (1) 62-74.

Spinuzzi, C. (2005). The methodology of participatory design. Technical Communication 52, 163-174.

Ertner, M., Kragelund, A.M. & Malmborg, L. (2010). Five enunciations of empowerment in participatory design. Proceedings of the 11th Biennial Participatory Design Conference (PDC '10). ACM, New York, NY, USA, 191-194. DOI=10.1145/1900441.1900475.

Zoffmann, V., Harder, I. & Kirkevold, M. (2008). A Person-centred Communication and Reflection Model: Sharing Decision-Making in Chronic Care. Qualitative Health Research 18, 670-685.

Edvardsson, D., Fetherstonhaugh. D. & Nay, R. (2010). Promoting a continuation of self and normality: person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing 19, 2611-2618.

Gambling, T. & Long, A.F. (2009). The realisation of patient-centred care during a 3-year proactive telephone counselling self-care intervention for diabetes. Patient Education and Counseling 2, 219-226.

Epstein, R.M., Franks, P., Fiscella, K., Shields, C.G., Meldrum, S.C., Kravitz, R.L. & Duberstein, P.R. (2005). Measuring patient-centred communication in Patient-Physician consultations: Theoretical and practical issues. Social Science & Medicine 61 (7) 1516-1528.

Leplege, A., Gzil, F., Cammelli, M., Lefeve, C., Pachoud, B. & Ville, I. (2007). Person-centeredness: Conceptual and historical perspectives. Disability and Rehabilitation 29 (20-21) 1555-1565.

Mead, N. & Bower, P. (2000). Patient-centeredness: a conceptual framework and review of empirical literature. Social Science & Medicine 51, 1087-1110.

McCormack, B. & McCance, T.V. (2006). Development of a framework for person-centred nursing. Journal of Advanced Nursing 56 (5) 472-479.

Silverman, D. (2009). Doing qualitative research: A practical handbook. 3rd edition. London: Sage.

Yin, R.K. (2008). Case Study Research Design and Methods. 4th edition. Thousand Oaks, CA: Sage Publications, Inc.

Lundberg, B.S. (2001). Participatory Action research -tradition, Theory and Practice. Karlstad, Sweden: Karlstad University Press.



  • There are currently no refbacks.