The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.
This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.
Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.
Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.
Frida Andréasson took the main responsibility of carrying through the co-design process and in the writing of the manuscript. Jan Aidemark took part in the planning and execution of the co-design meetings and in the analysis of the empirical material, as part of the preparations of the manuscript. Anna Strömberg participated in the design of the study, initiated the literature search and participated in the summary of literature, designed and participated in focus groups and commented on the drafted manuscript. Lennart Magnusson participated in the conceptual design of the study, advised on the co-design process with carers and commented on the drafted manuscript. Elizabeth Jane Hanson participated in the design and analysis work of the research study, contributed with literature and assisted with the writing and revisions of the manuscript. The research for the informal carer project has been conducted within the multidisciplinary research programme “ICT4SelfCare” headed up by Linköping University in collaboration with researchers from Linnaeus University and the Swedish Family Care Competence Centre. The ICT4SelfCare research programme is funded by the Swedish National Science Council and the Swedish Research Council for Health, Working life and Welfare (VR-FORTE) 2014-4100. The authors would like to thank the carers participating in the co-design process of the support programme for taking their time, sharing their life stories and valuable thoughts and ideas for developing the programme. The authors would like to acknowledge Joakim Ekberg, Henrich Keselmann and the rest of the “1177” online health care guide team at Linköping Regional County Council for their work and support to enable hosting of the carers support programme in the 1177 website “Support and treatment” section. Thanks also to Hanna Allemann, Susanna Åberg, Maria Liljeroos and Naoko Kato for conducting the focus groups interviews and the literature study for understanding carer needs and preferences. Finally, the authors would like to thank Lillemor Håkansson and colleagues at the Department of Cardiology at Kalmar hospital and the other units for helping with the recruitment of carers.
Andréasson, F., Aidemark, J., Magnusson, L., Strömberg, A. and Hanson, E.J. (2019), "Lifeworld in co-designing with informal carers", Journal of Enabling Technologies, Vol. 13 No. 1, pp. 29-39. https://doi.org/10.1108/JET-05-2018-0023
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