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Participatory design in education materials in a health care context

Journal article
Authors Frida Smith
Catarina Wallengren Gustafsson
Joakim Öhlén
Published in Action Research
Volume 15
Issue 3
Pages 310-336
ISSN 1476-7503
Publication year 2017
Published at University of Gothenburg Centre for person-centred care (GPCC)
Institute of Health and Care Sciences
Pages 310-336
Language en
Links https://doi.org/10.1177/14767503166...
Keywords Participatory design, written information, patient education materials, cancer care, person-centred care
Subject categories Nursing


Written patient education material, for example, discharge-information is commonly used in hospital settings. Despite following guidelines on how to best present text and using patients as consultants, improvements can still be made from a patient’s perspective. Here, we describe the process of developing patient education material using a participatory design methodology, with patients, clinicians, researchers and designers working as co-designers following a structured process map. The method emphasises coping with conflicting interests and using this as a source of development. The philosophies behind action research and person-centred care were combined in a practical setting, enhancing both perspectives and generating actionable knowledge to be further used in patient involvement projects. The results reveal that predominant areas of tensions focused on power, organization, content and clinical usability. This study is one of the first to involve patients as co-designers of education materials in the health care context, and not only as consultants. Working as co-designers was found to be productive and in line with person-centred care philosophy, with focus on partnership and equality. The results of this study can therefore benefit both patients and other relevant stakeholders in the healthcare system in developing written patient education materials.

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