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Lifeworld in co-designing with informal carers
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.
Linnaeus University, Faculty of Technology, Department of Informatics.ORCID iD: 0000-0001-9632-0292
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.ORCID iD: 0000-0003-2028-6213
Linköping University, Sweden.
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2019 (English)In: Journal of Enabling Technologies, ISSN 2398-6263, Vol. 13, no 1, p. 29-39Article in journal (Refereed) Published
Abstract [en]

Purpose – 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.

Design/methodology/approach – 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.

Findings – 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.

Originality/value – 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.

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2019. Vol. 13, no 1, p. 29-39
National Category
Other Health Sciences Information Systems, Social aspects
Research subject
Health and Caring Sciences, Health Informatics
Identifiers
URN: urn:nbn:se:lnu:diva-88908DOI: 10.1108/JET-05-2018-0023ISI: 000484263700003Scopus ID: 2-s2.0-85063910007OAI: oai:DiVA.org:lnu-88908DiVA, id: diva2:1347840
Projects
ICT4SelfCareAvailable from: 2019-09-02 Created: 2019-09-02 Last updated: 2023-08-16Bibliographically approved
In thesis
1. Doing informal care: Identity, couplehood, social health and information and communication technologies in older people’s everyday lives
Open this publication in new window or tab >>Doing informal care: Identity, couplehood, social health and information and communication technologies in older people’s everyday lives
2021 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of the thesis has been a) to analyse how informal care influences the identity of carers and care recipients, their sense of couplehood and social health, and b) to explore the use of Information and Communication Technology (ICT) in the context of informal care and the everyday lives of older people. Study I focused on how older carers conceptualised their identity as carers on a Swedish online social forum, using a netnographic methodology. The findings indicated a change in self-perception as the carer role was acquired. Carers’ capacities were filtered through the needs of the care recipient, making their carer identities into invisible selves. The findings revealed that online communication had the potential to create a virtual space of social recognition. Study II aimed to reflect on carers’ experiences of participation in a co-design process consisting of user group sessions with carers and researchers. The goal was to develop a web-based support programme for carers. The findings emphasised a need to consider carers’ lifeworlds and to develop flexible human-centred design methodologies, that are able to balance carers’ needs and ideas with proposed research outcomes. Studies III and IV utilised an ethnographic methodology. In study III, the notion of couplehood in informal care was analysed. The findings showed that in the process of becoming a carer and a care recipient previous (often gendered) responsibilities were re- negotiated and new practicalities emerged. Although these changes were understood as a natural part of family life, they nevertheless led to changes in the (power) balance between spouses, expressed in terms of a professionalised relationship and a sense of social isolation. ICT was used as a means to get a respite from caring and uphold a social connection with others. In study IV, the social implications and consequences of spousal informal care and carers and care recipients’ experiences of illness and the ill body was explored. The findings showed that the participants experienced barriers to living life as before. Thoughts about or the presence of ill and “leaking” bodies thus lead to “self-chosen” social isolation or social distancing by others. The thesis highlights that informal care needs to be understood as an identity forming practice, having a significant impact on involved parties’ sense of couplehood, their social health and that ICT can contribute to ease carers’ and care recipients’ daily life.

Place, publisher, year, edition, pages
Växjö: Linnaeus University Press, 2021. p. 111
Series
Linnaeus University Dissertations ; 405/2021
Keywords
Informal care, carers, older people, carer identity, ill bodies, social health, couplehood, Information and Communication Technology (ICT), ethnography, co-design
National Category
Health Sciences Sociology
Research subject
Health and Caring Sciences
Identifiers
urn:nbn:se:lnu:diva-99815 (URN)978-91-89283-34-3 (ISBN)978-91-89283-35-0 (ISBN)
Public defence
2021-01-29, via Zoom, Kalmar, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2021-01-11 Created: 2021-01-08 Last updated: 2024-02-29Bibliographically approved

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Andréasson, FridaAidemark, JanMagnusson, LennartHanson, Elizabeth

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