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

Abstract

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.