1.3 million Danes live with chronic illness, and some choose to join patient-led communities on social media to seek knowledge and share their illness stories with others in the same situation.
Research suggests that participating in online communities with peers can provide chronic disease patients with knowledge and care in ways that family and friends cannot. However, there is a large gender imbalance in these online communities, which are predominantly dominated by women. In Scandinavia, we have a strong tradition of democratic participation and citizenship. A tradition that the ever-increasing digitalization of society both expands and challenges.
The focal point of the project is to shed light on this gender imbalance in digital participation by investigating why so few men choose to share their illness stories in online patient-led communities and what consequences this could potentially have from a digital citizenship and gender equality perspective.
Purpose
Through individual interviews, the project seeks to uncover the following questions:
- Why do men (not) choose to join online communities for people with chronic conditions? And what do they do instead?
- How (if) is the infrastructure and form of communication in online patient-led communities more inclusive towards women than men?
- How (if) can digital communities become more attractive and inclusive spaces for men to share their illness-related stories?
Activities
- Invited to the conference: Popular Health & Social Media, University of Siegen, Germany, 12-13 September 2024
- Talk: Peer-patienthood on social media: the interplay of knowledge, illness and platformed affordances.
- Presentation of research-project (Klinik for Bækkenbundslidelser) AU HEALTH
Publications
- Karlsson, Amanda, Stage, Carsten and Ledderer, Loni (2024). Engage and withdraw: The role of peer-led online communities in the configuration of knowledge on chronic illness. Qualitative Health Communication, 3(1), 4–16
- Stage, Carsten, Karlsson, Amanda and Ledderer, Loni (2024). Online Patient Work: On the Use of Peer-Led Online Communities to Process and Prevent Discontinuity of Care. European Journal of Health Communication, 5(2), 44–59
- Ledderer, Loni, Karlsson, Amanda, Stage, Carsten. (In Press). Online care for patients with chronic conditions - a dynamic and temporal care practice in peer-led patient communities on social media. (Da: Online omsorg for patienter med kroniske lidelser - en dynamisk og temporal omsorgspraksis i patientorganiserede fællesskaber på sociale medier.) Tidsskrift for Forskning i Sygdom og Samfund.
Internal collaborations at AU
External collaborators
- HEALTH: Pelvic Floor Unit (Pelvic Cancer Late Effects Clinic/Pelvic Floor Disorders Clinic)
