Feeling less alone online: patients' ambivalent engagements with digital media.

Digital media Facebook chronic illness emotions loneliness patients

Journal

Sociology of health & illness
ISSN: 1467-9566
Titre abrégé: Sociol Health Illn
Pays: England
ID NLM: 8205036

Informations de publication

Date de publication:
07 2020
Historique:
received: 20 10 2019
revised: 22 04 2020
accepted: 27 04 2020
pubmed: 12 6 2020
medline: 19 8 2021
entrez: 12 6 2020
Statut: ppublish

Résumé

Digital media offer the chronically ill, especially those who experience related isolation, unparalleled opportunities to connect with others. This article asks, how do these individuals ascribe meaning to and use these media to manage their condition and related isolation? Using the concepts of affordance and emotional community, and drawing on the findings from an Australian study on patients' use of digital media, we examine individuals' ambivalent ascriptions of media, which are both feared and distrusted for the risks they present and embraced as invaluable tools of social connection. We argue that this ambivalence is explicable in terms of the communities to which the chronically ill belong which are founded on strong emotional bonds. In a context in which individuals tend to feel isolated through pain and/or stigmatisation, digital media may offer powerful means for sharing and affirming their experiences, the subjective benefits of which may outweigh the perceived risks. The article discusses the functions and features of digital media that the chronically ill value and distrust and concludes by considering the implications of our analysis for strategies to address the needs of people who feel isolated as a consequence of their condition.

Identifiants

pubmed: 32525577
doi: 10.1111/1467-9566.13117
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1441-1455

Informations de copyright

© 2020 Foundation for the Sociology of Health & Illness.

Références

Anderson, B. (1983) Imagined Communities: Reflections on the Origin and Spread of Nationalism. London: Verso.
Becker, G. (1997) Disrupted Lives: How People Create Meaning in a Chaotic World. Berkeley: University of California Press.
Boyd, D. and Ellison, N.B. (2008) Social network sites: definition, history, and scholarship, Journal of Computer-Mediated Communication, 13, 210-30.
Bury, M. (1982) Chronic illness as biographical disruption, Sociology of Health and Illness, 4, 2, 167-82.
Bury, M. (2001) Illness narratives: fact or fiction?, Sociology of Health and Illness, 23, 3, 263-85.
Castells, M. (2011) The Rise of the Network Society: The Information Age: Economy, Society and Culture, Chichester, West Sussex. 2, Malden: Wiley-Blackwell.
Charmaz, K. (1987) Struggling for a self: identity levels of the chronically Ill, Research in the Sociology of Health Care, 6, 283-321.
Cherry, K. and Smith, D.H. (1993) Sometimes I cry: The experience of loneliness for men with AIDS, Health Communication, 5, 3, 181-208.
Cigna. (2018) Cigna US Loneliness Index, Available at: https://www.multivu.com/players/English/8294451-cigna-us-loneliness-survey/docs/IndexReport_1524069371598-173525450.pdf
Co-Op/British Red Cross. (2016) Trapped in a Bubble: An Investigation into Triggers for Loneliness in the UK. Available at: https://www.co-operative.coop/campaigning/loneliness
Davis, J. (2012) Social media and experiential ambivalence, Future Internet, 4, 955-70.
DiJulio, B., Hamel, L., Muñana, C. and Brodie, M. (2018) Loneliness and Social Isolation in the United States, the United Kingdom, and Japan: An International Survey. San Francisco: The Henry J. Kaiser Family Foundation.
Gibson, J.J. (2015; orig. 1979) The Ecological Approach to Visual Perception, Classic edn. New York, London: Psychology Press.
Gillett, J. (2003) Media activism and internet use by people with HIV/AIDS, Sociology of Health and Illness, 25, 6, 608-24.
Gonzalez-Polledo, E. (2016) Chronic Media Worlds: social media and the problem of pain communication on Tumblr, Social Media and Society, 2, 1, 1-11. https://doi.org/10.1177/2056305116628887.
Gonzalez-Polledo, E. and Tarr, J. (2016) The thing about pain: the remaking of illness narratives in chronic pain expressions on social media, New Media and Society, 18, 8, 1455-72.
Hochschild, A.R. (1983) The Managed Heart: The Commercialization of Human Feeling. Berkeley: University of California Press.
Hutchby, I. (2001) Technologies, texts and affordances, Sociology, 35, 441-56.
Iannarino, N.T. (2018) “My Insides Feel Like Keith Richards’ Face”: a narrative analysis of humor and biographical disruption in young adults’ cancer blogs, Health Communication, 33, 10, 1233-42.
IPSOS. (2018) Over Half of Americans Report Feeling Like No One Knows Them Well. Available at: https://www.ipsos.com/en-us/news-polls/us-loneliness-index-report
Jensen, T.B. and Dyrby, S. (2013) Exploring affordances of Facebook as a social media platform in political campaigning, Proceedings of the 21st European Conference on Information Systems’, Completed Research, 40. Available at: https://aisel.aisnet.org/ecis2013_cr/40
Kleinman, A. (1988) The Illness Narratives: Suffering, Healing and the Human Condition. London: Hachette.
Larsson, A.T. and Grassman, E.J. (2012) Bodily changes among people living with physical impairments and chronic illnesses: Biographical disruption or normal illness?, Sociology of Health and Illness, 38, 8, 1156-69.
Marent, B., Henwood, F. and Darking, M., on behalf of the EmEmerge Consortium. (2018) Ambivalence in digital health: co-designing an mHealth platform for HIV care, Social Science & Medicine, 215, 133-41.
Maslen, S. and Lupton, D. (2019) Keeping it real: women's enactments of lay health knowledges and expertise on Facebook, Sociology of Health and Illness. https://doi.org/10.1111/1467-9566.12982.
Mazanderani, F. and Paparini, S. (2015) The stories we tell: qualitative research interviews, talking technologies and the “normalisation” of life with HIV, Social Science and Medicine, 131, 66-73.
Meek, P., Bergeron, D., Towne, D., Ahn, S., et al. (2018) Restricted social engagement among adults living with chronic conditions, International Journal of Environmental Research and Public Health, 15, 1, e158. https://doi.org/10.3390/ijerph15010158.
Miller, D. (2017) The Comfort of People. Cambridge: Polity Press.
Miller, D. and Sinanan, J. (2014) Webcam. Cambridge: Polity Press.
Nagy, P. and Neff, G. (2015) Imagined affordance: reconstructing a keyword for communication theory, Social Media and Society, 1, 2, 1-9. https://doi.org/10.1177/2056305115603385
Office for National Statistics. (2018) What Characteristics and Circumstances are Associated with Feeling Lonely?. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/wellbeing/articles/lonelinesswhatcharacteristicsandcircumstancesareassociatedwithfeelinglonely/2018-04-10.
Orgad, S. (2005) Storytelling Online: Talking Breast Cancer on the Internet. New York: Peter Lang.
Petersen, A., Munsie, M., Tanner, C., MacGregor, C., et al. (2017) Stem Cell Tourism and the Political Economy of Hope. London: Palgrave Macmillan.
Petersen, A., MacGregor, C. and Munsie, M. (2016) Stem cell miracles and Russian Roulette?: patients’ use of digital media to campaign for access to clinically unproven treatments, Health, Risk & Society, 17, 7-8, 592-604.
Petersen, A., Seear, K. and Munsie, M. (2013) Therapeutic journeys: the hopeful travails of stem cell tourists, Sociology of Health & Illness, 36, 5, 670-85.
Petitte, T., Mallow, J., Barnes, E., Petrone, A., et al. (2015) A systematic review of loneliness and common chronic physical conditions in adults, Open Psychology, 8, Suppl 2, 113-32.
Rabeharisoa, V., Moreira, T. and Akrich, M. (2014) Evidence-based activism: Patients’, users’ and activists’ groups in knowledge society, Biosocieties, 9, 2, 111-28.
Rains, S.A. and Keating, D.M. (2011) The social dimension of blogging about health: Health blogging, social support, and well-being, Communication Monographs, 78, 511-34.
Ressler, P.K., Bradshaw, Y.S., Gualtieri, L. and Chui, K.K. (2012) Communicating the experience of chronic pain and illness through blogging, Journal of Medical Internet Research, 14, e143.
Rosenwein, B.H. (2010) Problems and methods in the history of emotions, International Journal for the History and Theory of Emotions, 1, 1-33.
Rosenwein, B.H. and Cristiani, R. (2018) What is the History of Emotions?. Cambridge: Polity Press.
Saukko, P. (2018) Digital health - a new medical cosmology? The case of 23andMe online genetic testing platform, Sociology of Health and Illness, 40, 8, 1312-26.
Scambler, G. (2009) Health-related stigma, Sociology of Health and Illness, 31, 3, 441-55.
Schrock, A.R. (2015) Communicative affordances of mobile media: portability, availability, locatability, and multimediality’, International Journal of Communication, 9, 1229-46.
Sosnowy, C. (2014) Practicing patienthood online: Social media, chronic illness, and lay expertise, Societies, 4, 2, 316-29.
Statcounter (2020) Social Media Stats Worldwide Feb 2019 to Feb 2020. Available at: https://gs.statcounter.com/social-media-stats (Last accessed 10 March 2020).
Vicari, S. and Cappai, F. (2016) Health activism and the logic of connective action: A case study of rare disease patient organisations, Information, Communication and Society, 19, 1653-71.
Ytre-Arne, B. (2019) Media use in changing everyday life: How biographical disruption could destabilize media repertoires and public connection, European Journal of Communication, 34, 5, 488-502.
Ziebland, S. and Wyke, S. (2012) Health and Illness in a connected world: how might sharing experiences on the internet affect people's health?, The Milbank Quarterly, 90, 2, 219-49.

Auteurs

Alan Petersen (A)

Sociology, School of Social Sciences, Monash University, Melbourne, Australia.

Allegra Schermuly (A)

Sociology, School of Social Sciences, Monash University, Melbourne, Australia.

Alison Anderson (A)

Sociology, School of Law, Criminology and Government, University of Plymouth, Plymouth, UK.

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