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Doing informal care: Identity, couplehood, social health and information and communication technologies in older people’s everyday lives
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
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 [en]
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: urn:nbn:se:lnu:diva-99815ISBN: 978-91-89283-34-3 (print)ISBN: 978-91-89283-35-0 (electronic)OAI: oai:DiVA.org:lnu-99815DiVA, id: diva2:1515352
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
List of papers
1. Developing a carer identity and negotiating everyday life through social networking sites: An explorative study on identity constructions in an online Swedish carer community
Open this publication in new window or tab >>Developing a carer identity and negotiating everyday life through social networking sites: An explorative study on identity constructions in an online Swedish carer community
2018 (English)In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 38, no 11, p. 2304-2324Article in journal (Refereed) Published
Abstract [en]

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers’ capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Place, publisher, year, edition, pages
Cambridge University Press, 2018
National Category
Nursing Sociology
Research subject
Social Sciences, Sociology
Identifiers
urn:nbn:se:lnu:diva-64980 (URN)10.1017/S0144686X17000551 (DOI)000446465900006 ()2-s2.0-85020271213 (Scopus ID)
Available from: 2017-06-08 Created: 2017-06-08 Last updated: 2021-01-08Bibliographically approved
2. Lifeworld in co-designing with informal carers
Open this publication in new window or tab >>Lifeworld in co-designing with informal carers
Show others...
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
National Category
Other Health Sciences Information Systems, Social aspects
Research subject
Health and Caring Sciences, Health Informatics
Identifiers
urn:nbn:se:lnu:diva-88908 (URN)10.1108/JET-05-2018-0023 (DOI)000484263700003 ()2-s2.0-85063910007 (Scopus ID)
Projects
ICT4SelfCare
Available from: 2019-09-02 Created: 2019-09-02 Last updated: 2023-08-16Bibliographically approved

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