A qualitative participatory study to identify experiences of coronary heart disease patients to support the development of online self-management services |
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Authors: | Sandra Vosbergen Jolien Janzen Pieter Jan Stappers Myra C.B. van Zwieten Joyca Lacroix Karin Idema Inge van den Broek Hareld M.C. Kemps Roderik A. Kraaijenhagen Niels Peek |
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Affiliation: | 1. Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands;2. Department of Industrial Design, Delft University of Technology, Delft, The Netherlands;3. Department of General Medical Practice, Academic Medical Center, Amsterdam, The Netherlands;4. Department of Brain, Body & Behavior, Philips Research, Eindhoven, The Netherlands;5. De Hart&Vaatgroep [Dutch Patient Association for Cardiovascular Disease], The Hague, The Netherlands;6. Department of Cardiology, Máxima Medical Centre, Veldhoven, The Netherlands;7. NIPED Research Foundation, Amsterdam, The Netherlands |
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Abstract: | ObjectiveWeb-based self-management services remain underutilized in current practice. Our aim was to gain insight into disease and self-management experiences of patients in early and progressive stages of coronary heart disease (CHD), to understand moderating effects of daily life experiences on the utilization of web-based self-management services and preconditions for use.MethodsWe applied generative research techniques, which stem from the field of product design and are characterized by the use of creative processes. Three groups of patients with CHD received a sensitizing package to document and reflect on their health, and were subsequently either interviewed or participated in a focus group session.ResultsIn total, 23 patients participated in this study. Emerging themes were (1) fear for recurrent events, (2) experiences with professional care, (3) the perceived inability to prevent disease progression, (4) the desire to go on living without thinking about the disease every day, (5) the social environment as a barrier to or facilitator for self-management, and (6) the need for information tailored to personal preferences.ConclusionHow patients experience their disease varies between stable and post-acute stages, as well as between early and progressive stages of CHD. Patients in post-acute stages of the disease seem to be most amenable to support, while patients in stable stages want to live their life without being reminded of their disease. In the context of self-management, web-based services should be adapted to the variation in needs that occur in the different stages of CHD and new strategies to fit such services to these needs should be developed. Furthermore, they should be tailored to patients’ individual health situation and preferences, support patient empowerment, and manage expectations regarding the progression of their disease. |
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Keywords: | Self-management Patient experiences Qualitative research Coronary heart disease (CHD) Generative techniques Internet |
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