Hostname: page-component-cd9895bd7-dzt6s Total loading time: 0 Render date: 2024-12-23T03:12:40.215Z Has data issue: false hasContentIssue false

Developing a carer identity and negotiating everyday life through social networking sites: an explorative study on identity constructions in an online Swedish carer community

Published online by Cambridge University Press:  07 June 2017

FRIDA ANDRÉASSON*
Affiliation:
Swedish Family Care Competence Centre, Sweden; Department of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden.
JESPER ANDREASSON
Affiliation:
Department of Sport Science, Linnaeus University, Kalmar, Sweden.
ELIZABETH HANSON
Affiliation:
Swedish Family Care Competence Centre, Sweden; Department of Health and Caring Sciences, Linnaeus University, Kalmar, Sweden.
*
Address for correspondence: Frida Andréasson, Swedish Family Care Competence Centre, Linnaeus University, 391 82 Kalmar, Sweden E-mail: [email protected]

Abstract

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.

Type
Article
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adler, P. and Adler, P. 2005. Self-injurers as loners: the social organization of solitary deviance. Deviant Behavior, 26, 4, 345–78.Google Scholar
Adler, P. and Adler, P. 2011. The cyber worlds of self-injurers: deviant communities, relationships, and selves. Symbolic Interaction, 31, 1, 3356.Google Scholar
Andreasson, J. and Johansson, T. 2016. Online doping. The new self-help culture of ethno-pharmacology. Sport in Society, 19, 7, 957–72.Google Scholar
Arber, S. and Ginn, J. 1990. The meaning of informal care: gender and the contribution of elderly people. Ageing & Society, 10, 4, 429–54.Google Scholar
Aspers, P. 2007. Etnografiska metoder [Ethnographic Methods]. Liber, Malmö, Sweden.Google Scholar
Austrom, M. G., Geros, K. N., Hemmerlein, K., McGuire, S. M., Gao, S., Brown, S. A. and Callahan, C. M. 2015. Use of a multiparty web based videoconference support group for family caregivers. Dementia, 14, 5, 682–90.Google Scholar
Barbabella, F., Poli, A., Andréasson, F., Salzmann, B., Papa, R., Hanson, E., Efthymiou, A., Döhner, H., Lancioni, C., Civerchia, P. and Lamura, G. 2016. A web-based psychosocial intervention for family caregivers of older people: results from a mixed-methods study in three European countries. JMIR Research Protocols, 5, 4, e196.Google Scholar
Boots, L. M. M., de Vugt, M. E., van Knippenberg, R. J. M., Kempen, G. I. and Verhey, F. R. 2014. A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. International Journal of Geriatric Psychiatry, 29, 4, 331–44.Google Scholar
Bowler, G. M. 2010. Netnography: a method specifically designed to study cultures and communities online. The Qualitative Report, 15, 5, 1270–5.Google Scholar
Carretero, S. 2015. Technology-enabled Services for Older People Living at Home Independently: Lessons for Public Long-term Care Authorities in the EU Member States. European Union, Luxembourg.Google Scholar
Carretero, S., Stewart, J., Centeno, C., Barbabella, F., Schmidt, A., Lamontagne-Godwin, F. and Lamura, G. 2012. Can Technology-based Services Support Long-term Care Challenges in Home Care? Analysis of Evidence from Social Innovation Good Practices Across the EU: CARICT Project Summary Report. European Union, Luxembourg.Google Scholar
Chien, W. T. and Lee, Y. M. 2008. A disease management program for families of persons in Hong Kong with dementia. Psychiatric Services, 59, 4, 433–6.Google Scholar
Dobrof, J. and Ebenstein, H. 2003. Family caregiver self-identification: implications for healthcare and social service professionals. Generations, 27, 4, 33–8.Google Scholar
Eckert, P. and McConnell-Ginet, S. 1992. Think practically and look locally: language and gender as community-based practice. Annual Review of Anthropology, 21, 461–90.Google Scholar
Eifert, E., Adams, R., Dudleuy, W. and Perko, M. 2015. Family caregiver identity: a literature review. American Journal of Health Education. 46, 6, 357–67.Google Scholar
Elsrud, T. 2004. Taking Time and Making Journeys. Narratives on Self and the Other Among Backpackers. Department of Sociology, University of Lund, Lund, Sweden.Google Scholar
Erlingsson, C., Magnusson, L. and Hanson, E. 2012. Family caregivers’ health in connection with providing care. Qualitative Health Research Journal, 22, 5, 640–55.Google Scholar
Eurocarers 2015. Research Priorities Document. Eurocarers, Brussels. Available online at https://www.eurocarers.org/Eurocarers-Research-Priorities [Accessed 30 November 2016].Google Scholar
European Union (EU) 2014. Adequate social protection for long-term care needs in an aging society. Report jointly prepared by the Social Protection Committee and the European Commission, Brussels.Google Scholar
Fangen, K. 2005. Deltagande observation [Participant Observation]. Liber, Malmö, Sweden.Google Scholar
Foucault, M. 1972. The Archaeology of Knowledge and Discourse on Language. Pantheon Books, New York.Google Scholar
Foucault, M. 1988. The History of Sexuality. Volume 3: The Care of the Self. Penguin, London.Google Scholar
Friedemann, M.-L. and Buckwalter, K. 2014. Family caregiver role and burden related to gender and family relationships. Journal of Family Nursing, 20, 3, 313–36.Google Scholar
Giddens, A. 1986. The Constitution of Society. University of California Press, Berkeley, California.Google Scholar
Giles, D. C. 2006. Constructing identities in cyberspace: the case of eating disorders. British Journal of Social Psychology, 45, 3, 463–77.Google Scholar
Hanson, E., Magnusson, L. and Nolan, J. 2008. Swedish experiences of a negotiated approach to carer assessment: the Carers Outcome Agreement Tool. Journal of Research in Nursing, 13, 5, 391407.Google Scholar
Hanson, E., Magnusson, L. and Sennemark, E. 2011. Blended learning networks supported by information and communication technology: an intervention for knowledge transformation within family care of older people. The Gerontologist, 51, 4, 561–70.Google Scholar
Heward, K., Gough, B. and Molineux, M. 2011. Change of identity: the psychological and emotional impact of caring for someone with multiple sclerosis. Journal of Social Care and Neurodisability, 2, 1, 2132.Google Scholar
Hine, C. M. 2000. Virtual Ethnography. Sage, London.Google Scholar
Hooley, T., Marriott, J. and Wellens, J. 2012. What is Online Research? Bloomsbury, New York.Google Scholar
Johnson, G. J. and Ambrose, P. J. 2006. Neo-tribes: the power and potential of online communities in health care. Communications of the ACM, 49, 1, 107–13.Google Scholar
Kozinets, R. 2010. Netnography. Doing Ethnographic Research Online. Sage, London.Google Scholar
Lamura, G., Poli, A., Yghemonos, S. and Barbabella, F. InformCare: the European information hub on informal care. International Journal of Care and Caring, in press.Google Scholar
Lévesque, L., Ducharme, F., Caron, C. D., Hanson., E., Magnusson, L., Nolan, J. and Nolan, M. 2010. A partnership approach to service needs assessment with family caregivers of an aging relative living at home: a qualitative analysis of the experiences of caregivers and practitioners. International Journal of Nursing Studies, 47, 7, 876–87.Google Scholar
Lynch, M. 2010. From food to fuel: perceptions of exercise and food in a community of food bloggers. Health Education Journal, 71, 1, 7279.Google Scholar
Macdonald, A. and Cooper, B. 2007. Long-term care and dementia services. An impending crisis. Age and Ageing, 36, 1, 1622.Google Scholar
Marks, N., Lambert, J. and Choi, H. 2002. Transitions to caregiving, gender, and psychological well-being: a prospective US national study. Journal of Marriage and the Family, 64, 3, 657–67.Google Scholar
Montgomery, R. and Kosloski, K. 2009. Caregiving as a process of changing identity: implications for caregiver support. Journal of the American Society on Aging, 33, 1, 4752.Google Scholar
Montgomery, R. and Kosloski, K. 2013. Pathways to a caregiver identity and implications for support services. In Talley, R. C. and Montgomery, R. (eds), Caregiving Across the Lifespan: Research, Practice, Policy. Springer, New York, 131–53.Google Scholar
National Board of Health & Welfare Sweden (NBHWS) 2012. Anhöriga som ger omsorg till närstående – omfattning och konsekvenser [Family Members Who Provide Care to Relatives. Prevalence and Consequences]. NBHWS, Stockholm.Google Scholar
National Board of Health & Welfare Sweden (NBHWS) 2014. Anhöriga som ger omsorg till närstående – fördjupad studie av omfattning och konsekvenser [Family Members Who Provide Care to Relatives. A Detailed Study of Prevalence and Consequences of Informal Caring]. NBHWS, Stockholm.Google Scholar
National Board of Health & Welfare Sweden (NBHWS) 2015. Tillståndet och utvecklingen inom hälso- och sjukvård och socialtjänst – Lägesrapport 2015 [The State and Development of Health and Social Care. Progress Report 2015]. NBHWS, Stockholm. Available online at https://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/19747/2015-2-51.pdf [Accessed 30 November 2016].Google Scholar
Nef, T., Ganea, R., Müri, R. and Mosimann, U. 2013. Social networking sites and older users – a systematic review. International Psychogeriatrics, 25, 7, 1041–53.Google Scholar
Nolan, M., Grant, G. and Keady, J. 1996. Understanding Family Care. Open University Press, Buckingham, UK.Google Scholar
Norval, C., Arnott, J. L., Hine, N. A. and Hanson, V. L. 2011. Purposeful social media as support platform: communication frameworks for older adults requiring care C3. Paper presented at the 5th International Conference on Pervasive Computing Technologies for Healthcare and Pervasive Health, May 23-26, Dublin.Google Scholar
Orgad, S. 2006. The cultural dimension of online communication. a study of breast cancer patients’ internet spaces. New Media & Society, 8, 2, 877–99.Google Scholar
Perkins, E. A. and LaMartin, K. M. 2012. The internet as social support for older carers of adults with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 9, 1, 5362.Google Scholar
Pew Research Center 2014. Older Adults and Technology Use. Available online at http://www.pewinternet.org/2014/04/03/older-adults-and-technology-use/ [Accessed 30 November 2016].Google Scholar
Porter, D. 1997. Internet Culture. Routledge, New York.Google Scholar
Saba, V. K. and McCormick, K. A. 2001. Essentials of Computers for Nursing: Informatics for the New Millennium. 3rd ed. McGraw-Hill, New York, NY.Google Scholar
Salganik, M. and Heckathorn, D. 2004. Sampling and estimation in hidden populations using respondent-drive sampling. Sociological Methodology, 34, 1, 193240.Google Scholar
Sennemark, E. 2010. Blandade lärande nätverk. Ett verktyg för kunskaps- och erfarenhetsutbyte [Blended Learning Networks. A Tool for the Sharing of Knowledge and Experiences]. The Swedish Institute of Assistive Technology, Vällingby, Sweden.Google Scholar
Skeggs, B. 1997. Formations of Class & Gender. Becoming Respectable. Sage, London.Google Scholar
Smith, A. C. T. and Stewart, B. 2012. Body perceptions and health behaviors in an online bodybuilding community. Qualitative Health Research, 22, 7, 971–85.Google Scholar
SOU. 2016. Effektiv vård [Effective Care]. Statens offentliga utredningar, Stockholm, 2016:2.Google Scholar
Statistics Sweden 2015 a. The Future Population of Sweden 2015–2060. Demographic Reports. SCB, Stockholm. Available online at http://www.scb.se/en_/Finding-statistics/Publishing-calendar/Show-detailed-information/?publobjid=24552 [Accessed 30 November 2016].Google Scholar
Statistics Sweden 2015 b. Use of Computers and the Internet by Private Persons in 2015. SCB, Stockholm.Google Scholar
Swedish National Audit Office 2014. Support for Carers. A Report. Parliament's Internal Printers, Stockholm. Available online at http://www.scb.se/Statistik/_Publikationer/LE0108_2015A01_BR_00_IT01BR1501.pdf [Accessed 30 November 2016].Google Scholar
Turkle, S. 1995. Life on Screen. Identity in the Age of the Internet. Weidenfield and Nicolson, London.Google Scholar
van Dijk, T. 1997. Discourse as Social Interaction. Discourse Studies: A Multidisciplinary Introduction. Volume 2, Sage, London.Google Scholar
Yu, R., Mccammon, R., Ellison, N. and Langa, K. 2016. The relationships that matter: social network site use and social wellbeing among older adults in the United States of America. Ageing & Society, 36, 9, 1826–52.Google Scholar